My dear friends and relatives who have so faithfully remembered me in thought and prayer and with company and kind help . . . I cannot begin to tell you the strength and hope I gained throughout these months . . . it was a year ago September that I was diagnosed with stage 4 lung cancer, adenocarcinoma. It seems like both yesterday and eons ago.
On Monday I had a PET scan and today I saw my oncologist. I am officially in remission. For right now, this means that I’ll be fine until/if the cancer mutates and the chemo I take daily stops working. However, there are now two more forms of targeted chemo approved after this one. I have also discovered how to avoid some of the tummy discomfort I was getting on a daily basis with the medication. To say that I am “walking on sunshine” is an understatement. That being said, I am also able to do more again and am really feeling like my old self. As I told the oncologist – I’m so happy I planted those bulbs last fall!!!!!!
Someone asked me how I was feeling and I realized I haven’t posted since December. ..Well, I feel better than I have in a couple of years. I have come a long way in the last year. Last January I had pneumonia along with cancer treatment and felt really ill. This year I have my usual 10:30 nausea – almost like morning sickness- but feel really well a lot of the time. I still don’t have quite the stamina I had before but I’ve been able to stay up later to watch television programs I want to see and still get up early. Shopping is much easier – can pop in and out of several stores – and I feel like my “step” has picked up once again. I am really enjoying cooking again. It’s all good. Saw the oncologist yesterday and he’s asked me to hold off the Pet scan for a month – giving the surgery another month of healing so that doesn’t show up on the scan. I had a little concern because the funding had to be renewed for the targeted chemo and I am always fearful that somehow something will go wrong – it didn’t and I’ll continue as usual. Spoke with the surgeon who implanted the two devices I have had for treatment and am scheduled for my four year checkup for breast cancer in March.
I am already enjoying the fact that the days are longer and I am looking forward to spring. I am very grateful that I was diagnosed at a time when I could actually be treated. I don’t know what the future will be but I have SO enjoyed these last couple of months. I am also so very grateful to have friends and family close by.
Another chapter closes. Had full hysterctomy yesterday at two in the afternoon – am home today at 1:30 writing this with exactly one tylenol this a.m. since it occurred. Can’t believe this – laproscopic surgery is definitely incredible. Endometrial cancer completely removed. No sign of any other areas of concern – and three fewer places for cancer to attack. Had a turkey sandwich for dinner last night and scrambled eggs this morning and checkup appointment already made. No getting around the fact that Loyola is a huge, teaching hospital – saw round of interns and medical students twice before breakfast – but same thing happened when Jim was born at Brookdale in Brooklyn (they had seven newborn nurseries!). Can’t start chemo again until Saturday morning. That’s one full week off of it because of decidedly dangerous interactions with other meds. And – my appetite came roaring back. Nothing like chemo to take the fun out of food.
I had put up all the Christmas decorations already and basically busied myself so that I would NOT have to worry about things if I returned feeling unwell. Looks like I am now a step ahead of it all. No restrictions except for lifting more than 15 pounds for 6 weeks and only showers for 2. I think I can live with this.
I will be four years out of my breast cancer diagnosis in March. I was diagnosed with stage four lung cancer a year ago September. The new diagnosis is now history.
Thank all of you for your prayers, hugs and kind thoughts. They got me through this!!!!
We’re preparing for the huge snowstorm – it’s 6:20 P.M. – and the nurse at Loyola just called to schedule surgery.
I did mention that my uterus “lit up” on the PET scan and my oncologist had me talk with my gynecologist. He had concerns because he had not been able to obtain a satisfactory sample during a D and C. He recommended an hysterectomy at that time due to serveral factors but the diagnosis of breast cancer trumped everything and I had that taken care of. During the last couple of years tests have been negative and until the last scan there wasn’t any urgency. When I called him he recommended that I see a gynecological oncologist at Loyola. I mentioned the name to my oncologist and he concurred. This happened on the 11th. Loyola called, I picked up the PET scan disc and I saw the doctor at Loyola on Tuesday the 17th. He called yesterday to tell me that I had a low grade cancer. It is unknown what would result if I took hormones along with my targeted chemo and so hysterectomy was suggested – he had spoken with my oncologist and they felt that would be the better choice. I am definitely able to do this as far as my health is concerned. Since I am currently feeling so well I concur. I would hate to wait and find myself needing surgery or having additional trouble down the line . . . this seems like the right time to do this.
And so, I just got off the phone. Surgery is scheduled after Thanksgiving. Laproscopic. It will be just an overnight stay in the hospital. This doctor’s done many – believe me I checked. He’s been practicing for 34 years. He’s a kind man. He will do the surgery. I asked because knowing this is a teaching hospital I was afraid it might not be. Because he is an oncologist he will also be checking lymph nodes which is something my gynecologist had been concerned about. And, this is endometrial cancer. I have just received another new diagnosis.
Based on how well I feel, I have once more decided I intend to live to be at least 90 – that had been my plan before all of this started. Anyway, as I told my sister, I am sure I have 6 months out from each day I feel well. So, once more, I’ll just keep on truckin’!
It has been a long time since my last post. I really did not feel well for the first couple of months of this targeted chemo but gave it “my best shot.” Two weeks ago I saw the oncologist and said that I was finally feeling a bit optimistic because I thought my energy level was improving – but food still didn’t appeal to me and I continued to have med related feelings of nausea. The day after that visit I had a great day – felt like I haven’t in a year. This alternated with “off days” but I continued to feel and look better and energy levels picked up and I started feeling so darn hopeful. That’s the scary part – I was to have my PET scan and was afraid that somehow my feeling so great was just a fluke.
Wednesday I had the PET scan. Some of you know that hawks have become a symbol for me. One of my doctors and my cousin gave me St. Peregine medals – St. Peregrine was cured of cancer because of his faith – and it all seemed tied together. I have always looked for hawks on my way to and from McHenry – and saw them often enough. Well- when I came out of the hospital after the PET scan there was a hawk soaring above the entrance . . .it was really awesome to see. Hope may start as that “little winged thing” but it feels really good when it soars.
I saw my scan results yesterday. Still shadowy but it appears that the chemo is really working its magic. No appreciable inflammation any more – even the one affected lymph node is clear -and no signs of metastasis. I saw the oncologist today – for now I can expect to continue to feel better – I will continue to take the drug – and will continue to feel hopeful. There is once more a possible gynecological issue I will have to have checked out – but I’m okay with that as long as my lungs are clearing. There is still some fluid – the doctor feels it is part and parcel of the cancer and having had pneumonia twice and will possibly clear up as well.
It feels so wonderful to feel really well. Now I will just “keep on trucking” and hope for the best. Enjoy every day!
It has been an interesting couple of weeks. I felt really ill a few weeks ago – felt like I was moving under water. Discoverd my pulse was 60. ( I normally have a pulse in the mid to upper 80s and as a student in college once measured it at 120 during a bio lab) . I called the oncologist on call as a low heart rate might be caused by the chemo. Of course, this was on a Saturday morning. He asked if I was feeling dizzy – I was not – but that if I started to I should go to the emergency room Great! Called my oncologist on Monday and since I was due to see the radiologist on Wednesday received the same instructions – I was also due to pick up my new bottle of pills – and if I needed to, I was to check in with him (it’s lovely, their offices are across the lobby from each other). Well – my blood pressure was low as well and the suggestion made that I contact my primary care physician and lower my blood pressure meds. They had been cut in half for a week and cut in half again when I had my monthly EKG. Wednesday I had my regular check up with the oncologist. My EKG was fine and he doesn’t want to see me for a month. He said that my lungs sound good. He could not tell me if the nauseous feeling during the hours after my meds would subside. My blood pressure was still low and after a call to my primary care doctor I am off of blood pressure medicine entirely.
I am glad that I do not have to check in for a month and to use the doctor’s words am feeling “cautiously optomistic” but I certainly do wish I felt better. I do feel that I will be able to build up my strength once again and I do feel better for longer periods of time. I am only six weeks into treatment . . . it has felt like a very long six weeks . . . and has felt like another assault on my body. I do remind myself that my response to this treatment could be much worse. The monthly EKG is to monitor heart irregularities and there are possible liver problems. I do not have mouth sores and am not throwing up.
Once again – appreciate every day you wake up feeling well. And try not to be too judgemental of others – we really don’t know what others are going through.
I guess there is an awful lot to talk about since the last few posts. I know I mentioned our concerns about the cost of the new medication. I did find out that the prices quoted were all over the place. Even though I am on the medication I am not sure how much it actually costs – will have to wait for my next insurance statement – but the price seems to be around $9.000.00 per month – much less than the 14 -16 thousand I had been quoted – but still substantial. With a co-pay of between 5 to 20 per cent, this is significant. The good news was that the business office has found funds to cover my co-pay through resources they have for the next year. I will have to reapply after that. To say that this is a relief is an understatement.
And so . . . I have been on the new chemo just over two weeks. I take two pills a day. I feel fatigued, nauseated a good part of the time and have some visual disturbances – early a.m. if I move from a dim place to one with bright lights there are prismatic halos around shiny objects and trailing light streams – which do not last very long and aren’t really disturbing. This is what is necessitating the visit to the ophthalmologist per my oncologist – although the research seems to indicate that this has been thoroughly checked, it may decrease and it usually signifies no damage. This may improve with time. I did see my optometrist today who read the research I found and who could find nothing wrong with my eyes except for a slight adjustment in the prescription and he mentioned once again monitoring the beginning of cataracts. I have the opthomologist’s number and instructions to call either of them if this gets worse but indeed, the phenomena seems to be lessening and as promised is not at all bothersome and short -lived.
Food is the real problem. I never know what I will feel like eating and continue to make a huge effort that all of my calories “count.” This is not unlike the continual morning sickness I had when I was expecting Elizabeth. Sweets don’t taste particularly good -perhaps because I have been avoiding sugar anyway – but coffee tastes muddy, lots of things taste “off” and I have completely lost my taste for vegetables. I only “lost my breakfast” twice the first week and so have that under control but I never feel really good or have an appetite. What a strange place for me to be in. This may improve with time. Today I went to a lovely restaurant with my sister and brother-in-law, Ate half of my dinner and a forkful of dessert and I was finished, To be honest, the dessert did not even taste good. Sigh.
I will have to have an EKG monthly to watch for heart damage and blood tests monthly to check for liver damage. On a really positive note I had my first check up and all test results were good and I am doing well enough that I went straight to monthly check-ins! Also on a positive note – this whole journey with cancer treatment started three years ago when I went to the gynecologist and an hysterectomy was recommended. Breast cancer and now lung cancer took precedence over those concerns but I just had an appointment which verified that any gynecological issues are on hold – and actually I am not showing any reason for concern – so my next appointment with him will be in around a year.
Well, I am probably telling you all much more than I planned. However, if I seem distracted or distant please understand that this really is an onslaught to one’s body. My hope is that all will improve once I get more exercise and get used to the medication. My cousin’s daughter gathered the family together for a funded walk on Saturday, my daughter took us to Cirque du Soleil, my grandson spent the day with me and his dad joined us for dinner, we went out to a fabulous restaurants with my sister and brother-in-law and I am making plans to start walking with someone on a regular basis. All of these activities help enormously in getting me “out of myself.” I am always grateful to get up and start the day but I am looking forward to the day that I start to “overlook” the diagnosis It is not running my life – but I look forward to it being in the “background.” I so appreciate your care and concern – thank you from the bottom of my heart. I also believe I have learned a lesson I needed to discover. I have never been ill in my life until this happened. How differently I feel about other people and their problems. It is so easy to be judgmental and uncaring – not understanding what a struggle it can be to just eat a meal and maintain a “normal” day. If you would like to do something for me, please pass on this concern and understanding for someone – a person or even an animal- near you. We all need kindness.
After just posting the other day, here I am again. Still coughing- which I understand can last awhile- but will take my last antibiotic on Tuesday and will start the targeted chemo on Wednesday. Blood tests every two weeks the first month, then once a month and another Pet scan in three months. I have to admit to a little more anxiety than before. I know this is a “wonder drug” and there is even another one in the wings – but the world is filled with uncertainty and this isn’t helping. Keep me in your thoughts.
Some of you know we had been planning to go to our nephew’s wedding in Seattle last weekend – and I saw a number of responses to my Saturday post- that was the day. Well, it’s been a difficult time again. On the 8th the oncologist cleared me to go but by the 12th I was feeling horrible. My primary care doctor was able to get me in on Monday and I was diagnosed with pneumonia again. However, not as severe as in January, and with a healthy dose of antibiotics and a super strong cough syrup I was cleared to go . . . on Tuesday I realized I would “make it” and off we went on Wednesday morning. How wonderful it was to see everyone – it has been a long time. The wedding was beautiful-on the beach in front of their home – tables, lounge areas and dance floor set up on various terraces of their home – all with a view of Puget Sound. We were able to do a little sight seeing as well . We shared an apartment with Jim’s sister and her husband -lots of visiting. It was wonderful. On Monday after we returned I sort of crashed. I am sure the excitement helped keep me going and once I was home I was exhausted. Have to continue my antibiotics . . . and that brings me to the update of my care. We do not know yet if the drug company will pick up the copay for my therapy. I can’t begin to take it until I am off antibiotics – so I am back “on hold.” Right now, I think I need a couple more days of rest before I even think of getting anything done. I am disappointed about that – but SO glad we were able to make the trip.
Well, I’ve gotten my Pet scan results. “Cancer has not left the building.” Actually, on a positive note, it has not moved beyond the left lung and the one suspicous lymph node between my lungs is “less suspicious.” No signs of disease anywhere else . . . great, but then again lung cancer is not one of the nice ones. I spoke with the doctor about “the plan.” First of all, I will be able to attend a wedding I have been looking forward to. My cough is slightly worse and I have gotten a prescription and hopefully that will be okay. The doctor is having his pharmacy and business office hash out what may be the cost of treatment . . . the going rate is $16,000 a month without insurance. Thank goodness for catastrophic coverage – or at least, I hope so. The targeted therapy may not be quite so harsh as infused chemo and I get to keep my curly chemo locks. This may be more info than you care to hear . . .I am not pressing the “sympathy” button . . . but every cancer patient is having to face costs and those of us with insurance are the fortunate ones. Just imagine what this is like for a huge number of people without insurance and emotional support. Imagine the choices that had to be made before catastophic coverage. Anyway, I am feeling okay at the moment. Have had some up and down days-it’s unnerving to have to wait for answers – but as usual, now that I know that there is a plan, I feel considerably calmer. My general health is still good so I should be able to manage this as well. Keep me in your thoughts.