I just realized that it had been over a year between past entries and my last entry. How much can change in just a year! Look at 2020 and the havoc wrought. So much else can change too . . .
I have so much to be thankful for. It is incredible. I had another MRI and the lesions are smaller again. All of my blood work is good . . .better than before when I was on the other medication. Muscle aches and pains are still bothering me and I have lost two thirds of my hair. We won’t know for six months if any of this has been transient or will be more permanent. Most exciting, a blood test is done regularly to check for cancer activity. The results this past test were lower than they have EVER been . . .after chemo, radiation and the first targeted therapy. The graphs shows an almost vertical decine.
So . . .hugs to all of you. This was all such good news. There is so much we can be grateful for . . .the Sunday comic reminded us that, after all, the first Thanksgiving was celebrated after dire hardship. We can always find things we are thankful for.
I last wrote a little over a year ago. My doctor had mentioned possible metastisis of my lung cancer . . .the medicine I started in 2014 was supposed to be helpful for 12 to 18 months. I regularly had a test for “tumor markers” and that had been going up , , ,although nothing was showing on my PET scans. Then earlier this year a small nodule appeared on my left adrenal gland . . .and just over a month ago the decision was made that it was time for an MRI of my brain. I had the scan. It showed a number of lesions scattered throughout . . . all relatively small. I had not had any symptoms of cancer in my brain and so once more this was disovered at an early stage. Then we scrambled. The new medicine I mentioned in my last post which can cross the brain/ blood barrier was prescribed . . .as well as steroids to reduce any inflammation. I am afraid I had quite a problem with steroids. They made me really angry . . .I was yelling at Jim and the cat. My oncologist told me it’s in the contract . . .I can yell at Jim but must not yell at Splotch. But worse than that, I suddenly realized I was losing strength in major muscles affecting walking . . .and some core, arm and hand strength. I actually felt worse than I had on chemo. Because I was going to physical therapy for an injury to my foot and resultant problems with walking (my knee was in need of replacement several years ago already but they will not replace it until I am in pain) I was able to work on the muscles I needed to strengthen. I have gone from leg lifts with resistance bands to not being able to do leg lifts at all and now back to resistance bands. I have a ways to go before my muscle tone is anywhere near what it was . . .there was actually muscle wasting and it will take some time to rebuild.
HOWEVER . . .I had an MRI last Friday and saw the oncologist today. He walked into the exam room and simply said, “Congratulations.” The small lesions are gone and the others are diminished. The inflamation is gone and the medication is working. There may be some side effects but there are already some GOOD ones. No nausea mid day and my morning coffee tastes wonderful once again. I am so very grateful.
So, for now, I will just keep exercising. I will keep my mask on . . .my immune system does not need to be compromised with germs of any kind. I will enjoy each and every moment of each and every day . . .good food and good friends. . . and continue to work very hard on the question that keeps coming back to me . . .”what is my purpose, why am I still here.”
So, it’s July. I’ve had another unevetful PET scan. I continue to take daily chemo. I have ups and downs. I continue to plan . . .I have to have things to look forward to . . .but this really is not an easy trip. That marker I’ve mentioned keeps going up. This last visit was the first time the oncologist has expressed concern about it . . . said he was thinking of me while attending a conference. There is a new drug for brain metastasis of lung cancer . . .it’s not chemo . . .and then he said that perhaps he should do a CT scan of my brain although no symptoms are showing because a CT scan is more inclusive. . .and we’ll talk about that next visit when we schedule the next PET scan – and of course now I am googling and hyper analyzing any symptoms.(and he did say that there are also two or three other treatments available if I need them) I haven’t talked with anyone except Jim about this and now I’m putting it out there for all of you. I know, I am only one of millions of people undergoing stressful medical conditions. AND – I am really fortunate because I feel relatively okay-but this is why I am definitely living in the minute most of the time. Drop everything to visit – SURE. Have a lot of people over…ABSOLUTELY! Enjoy every minute of outside time YES. I’m not getting everything done but I am storing up all the wonderful events and memories because I am savoring the time I am spending with other people. And, here’s the political part, the idea of doing away with “pre existing” conditions frightens me. It scared me when I retired and signed up for supplemental and already had a diagnosis of triple negative breast cancer . . . I have been fortunate that I have been able to get treatment . . but everyone else should have that same right – and I say “right” not privilege. Health care is available in most countries. We are SUPPOSED to be right “up there.” Until we take care of all of our people I don’t think we are. Meanwhile, I have a large party coming up, I’ve been hanging out with friends, friends and their grandchildren, my own kids and grandchildren . . .life is for the living…AND this fall it will be 5 years since I was diagnosed with stage four lung cancer. I’m still here. I actually have some plans made that reach into 2022. It ‘s all keeping me going. Being a child of the 60’s, I’ll keep trucking’.
Well, it’s been over six months since my last post. I didn’t want to post until after Christmas. It’s been an interesting year. Was so happy in May because the doctor said the PET scan would not need to be done for eight months instead of six. Of course, I was feeling on top of the world. However, one can never feel cocky with this diagnosis. Shortly after that time a tumor marker started to increase. It was slow at first then started to go up more rapidly. The oncologist suggested an earlier scan and I determined to have it done before Christmas. I NEED to know what’s going on. The PET scan showed no cancer. Relief, yes, but will need a scan again in six months and of course will be nervous if the marker continues to rise.
More importantly, there is something I need to share with all of you. Those who are also Facebook friends know that I have been advocating for medical marijuana. My oncologist has been clear from the beginning that it is indead in his “bag of tricks” along with 3 or 4 other chemo treatments as things become “more complicated.” I’ve done a lot of research and I have been blown away by the history of this medicine – indeed it has been used in India, China – perhaps even the Bible – and here, In the United States – in pharmacies – until around 1935. The history of what happened is incredible . . .but that’s not THIS story. Two friends nearly my age have mentioned they have their medical cards. One for multiple sclerosis and one for fibromyalgia. They are managing their symptoms. I started looking into CBD. This is made from the hemp plant, a relative of marijuana, but does not contain psychoactive THC. I have some relatively severe anxiety issues and have a prescription to take 1/2 milligram of lorazapam (Ativan) for an attack. This is not a particularly benign drug. Use of it with cold medication and some prescriptions can result in impaired breathing. My doctors, however, also felt that uncontrolled anxiety would not be beneficial either. Anyway, on December 1st I began taking 5 miligrams of CBD two times a day. I am using American Shaman water soluble. I take .5 mil in a cup of tea 2X a day. The day I started I talked myself out of a panic attack and attended a function with a group of people who were strangers to me – I realized late that evening that I had had a wonderful time and lessened anxiety. I’ve talked myself out of two more attacks and have not taken lorazapam since then. As time went on something else happened. For years I have had digestive issues and now the chemo med I take exacerbates the problems. I have talked to my doctors, a nutritionist and researched and have not been able to deal with the problem without medication. Well, I have not had to take medication for that problem since the 1st of December either. When I told my primary care physician and my oncologist that I had started taking CBD oil they both expressed positive responses . . . actually congratulated me . . .and my oncologist mentioned that if and when I need it he will prescribe marijuana for nausea, pain, etc. Looking at the research that is available there are so many symptoms of so many illnesses that can be mitigated by these drugs. They are safer than alcohol, NO ONE has ever died from an overdose and tobacco and alcohol actually appear to be more of an addiction problem than “weed.” My CBD come from a store in Grayslake carrying only this product which is totally legal.
So, WOW, here I have actually become a vocal proponent. From everything I have studied this is actually one relatively safe pain reliever . . . is medically useful for a myriad of problems . . .and it looks like we are closer all the time to legalization.
Apart from this, I continue to look forward. As the doctors have said, they keep hoping to have something else when one chemo/med doesn’t work. This was my fifth Chrismas since a diagnosis of stage four lung cancer. (7 since triple negative breast cancer and 4 since endometrial cancer). I intend to keep fighting . . . and I thank you all for your prayers and kind thoughts. If you are curious or have any questions I would be glad to answer them if I am able.
Well, another six months have passed. Damn cancer. You’re always waiting for the other shoe to drop even when life seems wonderful. There is always that feeling that somehow something will not be right.
I had my last PET scan on May 21st. I was getting my “every six week” EKG at the doctor’s office and my scan results came in. No sign of cancer. Wonderful. It then proceeded to mention an enlarged heart and another organ with thickened walls. The week before I had had chest tightness which I mentioned to the doctor and the next thing you know I am seeing a cardiologist. It is nice when one can feel comfortable and at ease when one is not sure what will happen. The cardiologist took his time reassuring me about all the areas of my health which are really good and was able to do an echo cardiogram at the office. His technician told him – and he passed on to me- that there are apparently no signs of heart disease and no fluid around the heart – and we have now proceeded to schedule a stress test to confirm what he believes is a healthy heart. Wonderful. Meanwhile, my temperature continues to average 96 degrees, my left hand is now puffy as are my ankles, and my blood pressure was 110/40 this morning in the doctor’s office. It’s the psychological “hit.” Just when I am feeling fairly well and confident I have a whole different weath of concerns.
I haven’t mentioned any of this to anyone except Jim so you are all hearing about this at the same time. I keep reading article about dealing with people with illness. Let me tell you, I have now come to the conclusion that I will never assume someone is healthy. Sometimes it is just too hard to talk about it. And, in fairness, I probably am fine with the exception of “cosmetic” issues with puffiness. Think of that for a minute . . .I am not comfortable in sandals because of this “cosmetic” issue. And then I feel guilty because I feel I should just be so very grateful because here it is . . . 6 years after triple negatvie breast cancer, 4 years after stage four lung cancer and 3 years after operable endometrial cancer and here I am “fussing.” Add this to indigestion, nausea and momentary feelings of dread. Be patient with people with a diagnosis of anything – COPD, heart problems, etc. No one wants to talk about their issues all the time but it doesn’t mean their lives are impacted any less.
I hope your holidays are wonderful!
I’ve had an incredible six months since I last posted.
I went to Sweden, met warm and wonderful relatives I hadn’t known, saw where my father lived as a child and went swimming in a lake in the forest, attended a Swedish Lutheran service in a chapel next to a lighthouse which felt like it was the end of the world. I left a little bit of my heart there. What an incredible journey this all has been . . .
I came back feeling blue. The trip was over. Having cancer is an ongoing battle. The doctor reminds me that there are other treatments when this one stops working . . . ” the ‘when this one stops working'” part is the annoying thing. One is always aware. I’m glad that I continue to be joyful in the moment a great deal of the time. I did decide that I have a five year plan – I planted the oak tree after all- but I needed to do something for me to prove to myself that I was so much better. I didn’t talk about it . . . a couple of people noticed what I was doing and . . .I was afraid that if I said anything I would feel horrible if I could not finish. So . . . I painted the exterior of the house. Started out with a small pan of paint and worked a little at a time, then a little more and found I was able to climb a ladder – I couldn’t even climb a stepstool after chemo and radiation- balance took a long time coming back. I used a 2 1/2 inch brush and painted the once white house a color called “flurried blue.” Touched up trim (I’ll do that next year). painted the garage door and side door. I love it. I really love that I finished it. Now I have other projects and goals and feel like moving forward again. I know, this isn’t a HUGE deal – there are a lot of people who do this all the time. I really had felt that there probably wasn’t much future and I felt discouraged. But I’m a seventy year old woman battling cancer – and I’ll be damned if I’ll throw in the towel. I’m still doing water aerobics twice a week and following a diet. As someone said to me recently – “you’re melting away.” I’m going to continue.
And – the scans were all clear once again. I still get occasional nausea – I still take oral chemo twice a day – I still need to have a port flushed and blood tested every six weeks. Oh, and I planted even more – 12 shrub roses and assorted shrubs and perennials I am looking forward to this spring.
Six months have passed. I am still on chemo, trying to lose weight and with the help of friends have started water aerobics (not a small feat for someone who hasn’t had a swim suit on in 20 years) joining friends and family for more activities than before and generally loving each and every day.
This spring I passed the five year mark after surgery and chemo for triple negative breast cancer. The doctors are not at all concerned about the endometrial cancer because the surgery took care of everything. However, there is always the specter of lung cancer and I was due for my PET scan. It is always disconcerting. I know how easy it is to assume everything is fine and then get blind sided by test results. I had the PET scan and saw the radiologist’s report – and I show no sign of cancer at any place in my body at this time. I don’t see the oncologist until next week – and almost feel guilty about “getting the news early” because he does delight in telling me that I am fine – but I prefer to know so that I will be armed with the next round of questions. Meanwhile, yet another drug – from Japan – has been approved for the type of cancer I have. I told the radiologist some years ago that I was afraid they would continue to keep me going until the next med became available. His response was “that’s the plan.” I have never been so grateful for science and medication. It will be three year this fall since I was diagnosed with stage 4 lung cancer and my primary care physician said yesterday that I am in better health and spirits than I was before all this ocurred. There is nothing like a crisis to get one moving. I continually feel the support of friends and family, prayers and kind words. I am aware that this will most likely recur and I will need new treatment but in the meantimeI have changed my six month plans for a five year plan. I’ve shared an interest in photography with my oncologist and he has hung a series of photos I made of the changing seasons in the hallway in his office suite – and we talk about the “awe” of this world and life. It’s wonderful to be alive.
I realize I started my last post with a lament about getting complacent. I’ve waited a day to post . . .had my oncologist’s appointment on Wednesday – had the PET scan last week and already knew the results because I read the report on line. Believe me, I’m not REALLY complacent . . . there is no sign of anything on the scan. Doc doesn’t want to see me until January and although I’ll still have to go there to pick up my chemo and have my port flushed, he felt it would be nice to have a rest until after the holidays. No mention was made of thinning bones. Still calcification of blood vessels – but I am going to be 70 after all. I doubled my intake of magnesium and the nausea hasn’t bothered me but once in weeks. I’ve been working in the yard – bought a machete some years back and have been using it. Have planted not only spring bulbs but summer flowers. I have felt like myself again for the last month. It’s incredible to feel this good and this hopeful. Have my fingers crossed that the chemo just keeps doing its thing. Continue to keep me in your thoughts and prayers. I am not OVER this – just have to keep fighting the battle – so all kind words are appreciated!
How complacent one gets. I almost forgot to post anything. There is news – I’m still in remission and am doing pretty well considering – still get “morning sickness,” still have some edema in my feet and ankles and still have some fatigue. Other problems have popped up. I’ve been diagnosed with osteroporosis and some loss of bone in my spinal column (no genetic history we know of), there is some calcification in an artery and since my last dental visit six months ago I suddenly have 9 cavities! Per my oncologist, these aren’t related to chemo – but I do have my doubts. I won’t have to take any additional meds but have a “calcium rich” diet to follow which includes the latest admonition that dairy products are not good for us. So . . . meanwhile, I continue to walk a little more, sit in the sun (vitamin D after all) and visit with family whenever possible. Can’t believe it will be two years ago September I was diagnosed with Stage 4 lung cancer. I’ll be in remission until this drug stops working and there are other treatments waiting in the wings. I’m so fortunate to have been diagnosed when there really is hope!!!! I’m looking at bulb catalogues already. My doctor said he had a patient who used to ask him if he could still buy green bananas. I’m happy I’m still thinking in terms of next spring and summer!!!!!
The news that I’m in remission from stage IV lung cancer was huge. However, anyone who has had cancer will tell you that one is always looking around corners. It was four years ago this month that I decided to get all my “necessary” medical tests done. A suggestion for prophylactic hysterectomy came first followed by the diagnosis of Triple negative breast cancer. The cancer came first. I had a lumpectomy followed by placement of a Savi port and a week’s worth of twice a day radiation – followed by chemotherapy. I had a mammogram today- four years out. I feel badly because the doctor I’ve been seeing for these check-ups is moving on. He implanted both my radiation port and the port I still have for chemotherapy. However, he once more assured me that this particular cancer usually roars back in two years and after three years the prognosis is pretty good. Well, it’s now four years and my tests were clear. I’ll continue to have mammograms but the results will go to my oncologist and gynecologist and so I have one less doctor to see. The pink tulips I planted the fall of 2012 are coming up and the bulbs and plants I planted last fall are coming up. All I can say is thank you all for your continued prayers and kind thoughts. You’ve all helped me through this. I’m going to keep on planting.