Journal
Linda Rotondi's Journal
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Written March 3, 2009 10:06am
Dear Family and Friends,
Last night, I was talking to my sister in law, Laurie, and she expressed her concern that it has been taking me way too long to update my journal. After getting a good night's sleep, I think I'm ready to write this update, so Laurie, thanks for the interest.
Yesterday, even though there was a major snowstorm here in the Boston area, my fearless friend, Barbara, drove me in to Dana Farber in the afternoon for my chemo appointment. The majority of the storm was over by noon and my appointment wasn't until 3:30 in the afternoon, so we were able to make good time on the major roads into Boston because so many others had stayed home yesterday. I also had the shortest visit for chemo in my Dana Farber history because of all the patients who had cancelled. My infusion nurse, Carla, wasn't in yesterday, but I was under the wonderful care of Elaine and Zulma. Dana Farber has a new policy which is an obvious attempt to lessen any mistakes in drug-giviing. Two nurses need to confirm the patient's identity and the correct dosage of chemo drug. My only complaint is that I am asked to say my birthdate aloud over and over to confirm my identity. My lovely Irish social worker, Karen, now knows my birthdate by heart, she has heard it so many times. I'm not overly concerned about aging--it certainly beats the alternative, but even I think 1953 sounds like eons ago!
At any rate, I received my dose of navelbine. It comes with a warning about spilling it on skin as it can cause severe burns. The nurses wear special chemical gloves and aprons when dispensing it. I don't know about you, but it does seem odd to have this Draino stuff injected into my veins. Yesterday, while I was talking to Barbara and Karen, I felt a drop land on my arm. It is interesting to note that knowing what navelbine can do to your skin, I didn't immediately dump my Poland Spring water on my arm, but instead pointed out the drip to my nurse in a rather casual way. She apologized and informed me that the drip was actually the sodium solution, not the navelbine. What a sense of relief! The rest of the treatment went well and for the next two hours or so I felt some sharp pains throughout my body that would take your breath away, but only lasted for a second or two. Again, I was happy to have proof that the chemo drug seems to be working on my cancer. I will find out for sure on March 20 when I have had one more chemo treatment and will be given a CT scan. Please keep me in your prayers.
Today I will be having a visit from a physical therapist who will be putting me through my paces. I hope she has forgiven me my question during her last visit. I'm afraid I asked her if she had ever been a Marine. She protested that she is the "softie"--to which I replied that "we" are doing way more reps than I expected. Apparently, my gabbing was causing the extra reps because she was losing count while we were talking. Today, I will try to not talk so much--yeah, right.
I would like to thank my husband Chuck for all the many kind things he has done for me over the past weeks (and years). He has been wonderful and I know I am not always the easiest patient. There is one thing, however, that I am a bit concerned about. Over the last few weeks, Chuck has absentmindedly left the electric stove burner on for hours on at least five occasions. This, while he has urged me to stay upstairs where I will be "safe" until he comes home. If there are any psychiatrists reading this, do you think that subliminally he is trying to "off" me? Sorry, my terminology reflects the number of crime shows I have been watching over the past few weeks. He seems contrite when the stove thing has been pointed out to him, so I think we'll just hope this is a passing thing.
Thank you for your many expressions of concern and caring.
Love,
Linda
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Written February 26, 2009 8:27am
Dear Family and Friends,
The greatest glory in living
lies not in never falling
but in the rising
every time we fall.
Emerson
The following entry is one that has been on my mind for such a long time. I have wanted to let everyone know the two women who have inspired me with their spirit and their courage. The first woman is my sister in law, Kathy Rotondi. She has been dealing with multiple sclerosis for almost thirty years now. When she was first diagnosed, her husband, George, Chuck's brother, was diagnosed with cancer. We lost George, who was always such a source of strength for the rest of the family and Kathy was left to raise four, young children while struggling with her own illness. She has always been very courageous in her quiet way in dealing with her illness. Over the years, it had progressed to the point where she was confined to a wheelchair. Never once did I hear her complain about it. Looking back, I feel guilty that I would take her out shopping and complain about a toothache, etc. This, when to find out how she was feeling, it was necessary to drag it out of her. Eventually, Kathy started a new regimen of treatment and has now progressed to walking with the aid of "walking sticks." She is a beautiful person inside and out and even though she is petite, she has the heart of a warrior and an amazing amount of faith. When I think of her, my strength and my faith are restored.
The second woman I would like to tell you about is no longer with us. Her name was Donna Roberts and she lived in my little town and valiantly battled cancer for many years. I didn't know Donna well, but I was always fascinated with her ability to concentrate on being "normal" for her two young boys. Over the years, she lost her hair and it grew back and she would wear it short without apology. I knew Donna from seeing her at church and from delivering meals to her as part of the church's effort to help those who were sick. When I would talk to Donna, I wouldn't know what was the correct thing to say, but she always put me at ease. One of our last conversations concerned my daughter's acceptance into college. She was always interested in other people's lives and she never lost her interest in the world around her. She praised the biography of John Adams that she had just finished and wanted me to read it. I did so after her death and realized what a gift she had given me. My wish is that I can be like her throughout this illness--putting others at ease and staying connected to life.
My humorous take on all things cancer is my way of dealing with this illness. I would like to make people comfortable enough to ask questions and to demystify the aura surrounding this disease. It needs to have a spotlight pointed at it so it can be seen for what it is and then creep back into dark corners like the cockroach it is (sorry, guess I should have had that second cup of coffee, after all). Know that I love you all and my wish for you is that you always stay strong and never lose faith.
Love,
Linda
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Written February 24, 2009 8:08am
Dear Family and Friends,
Yesterday, Barbara and I went in to Dana Farber to start my second course of chemotherapy with navelbine and zumeta. It was a long day (we like to refer to it as "Dana Farber Time" ) when your individual appointments always take longer than expected. In the late afternoon, we sat in the waiting room, waiting to be called in for chemo and made spectacles of ourselves. I wanted Barbara to hear the playlist that Jessica had downloaded on my nano ipod, and Barbara insisted on sharing an earpiece each so we could both enjoy the music. She then tried to take pictures of our heads together with her camera phone which she then sent to our email address. She always impresses me with her techno savvy abilities, although we both agree that we harbor just a little bit of anger at the 4 1/2 year old Asian girl who is appearing on recent television commercials showing how easy it is to download photographs on her computer (in my situation especially , I realize it is wrong to hate a small child, but I just hate when she rubs it in that she is only 4 1/2 and she knows how to do something I can't!).
In the waiting room, I was really impressed with the walker that an elderly man was using when he sat down next to me (and my walker). I'm afraid he moved slightly away from me when I complimented him on his basket and cupholder. I never really looked at a walker before, but now that I have my own, you start to notice how it can be improved. I also didn't notice until yesterday, how noisy my walker wheels are--I definitely need a little WD40.
The chemotherapy went well and so far I haven't experienced the flulike symptoms that sometimes accompanies the use of zumeta (which is a bone strengthener injected in my i.v. every month). The last time I was given navelbine I experienced a sharp pain in my chest that lasted a couple of seconds. My infusion nurse and my oncologist agree that this sometimes happens during or after the transfusion and indicates the chemo drug is duking it out with my cancer (my words, not theirs). If it doesn't happen, it doesn 't mean it is not working, but for me it is a comfort to actually feel the drug at work.
This website was originally set up to inform family and friends of my updates in treatment. For those of you who may not be aware of this fact, Chuck is the youngest of thirteen children. Please Rotondi Family do not take umbrage at this statement, but if one were to try the children's "whisper game" with the Rotondi Family, the gist of the whispered rumor would break down with the first person. We thought a website like this one would eliminate that potential problem and I think it has. I have found that I am truly addicted to checking the website for messages. Your words of encouragement mean so much to me. Please be aware that even though it appears that 1600some people are visiting the website, that number probably just represents the immediate Rotondi Family!
When we picked a design from the many listed for this website, I rejected the traditional pink ribbon breast cancer design--I don't know about you, but I'm tired of that logo. I then considered using spring flowers, but they were mostly yellow--not a bad color, but not one of my favorites. We finally decided on the lupine design which I really love. However, I realized a week into the website that I have never had luck raising lupines--a fact that might not bode well for a cancer website, ya think? I mentioned this fact to my neighbor, Sue, and she was very upbeat about my luck changing. I hope she's right.
I almost forgot to mention--Morgan has been "skyping" us on the computer and she looks great and is really enjoying Germany!
Thank you again for all of your positive thoughts and prayers.
Love,
Linda