Category: Uncategorized (Page 3 of 4)

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.

I saw my oncologist on the 8th and we’ll proceed to “wait” until another PET scan in two months.  I feel okay – but definitely have lost strength and energy and I  become anxious when I have to take a break or do not feel 100%.  Probably expecting too much . . . I just do not like not feeling “well.”  Today I feel like I might be coming down with a cold and that immediately causes me to be concerned about breathing issues, etc.  Guess the bout of pneumonia in January didn’t help.  The oncologist assured me that anxiety would be normal – and that he expected I would have to take breaks during yard work, etc.  – and so I guess what I am feeling is perfectly normal.  I just don’t like it.  Aside from the grumbles I am taking great delight in finally seeing flowers and some “green.”  I am looking forward to some REALLY warm weather.

Had my PET scan on Monday and am now “on hold.” Actually glad that is the case. A lot of inflammation showed up . . . hard to tell if it is from residual pneumonia problems or general inflamation after treatment or stubborn, residual cancer cells. Some areas are completely free of activity so we know treatment worked there. So – what to do, what to do. I have opted to wait for three months with monitoring in between and have another scan at the end of that time. I will check in with the oncologist monthly and of course see him if anything should seem other than “healthy.” If the scan still shows suspicious activity at the end of three months or if I should develop other issues I will start targeted therapy – chemo in pill form. This delay will allow me to continue to build strength as well as change my current blood pressure medication which is incompatible with the therapy. And so the journey continues . . . but today being able to walk outside, to see an hawk swooping in the sky and to visit with an old neighbor . . . it feels good!!!!!!

Guess it is time for an update. Chemo as scheduled on the 11th. I had gone with a couple of grumbles about my health. Had a cough. Just didn’t feel well. Basically was given the choice of more antibiotics if I felt it was necessary and postpone chemo or go ahead. Went ahead. The doctor told me later he assumed I would choose that option – and I know if I really needed the antibiotics they would have been prescribed. We went out to celebrate Jim’s birthday afterward and as usual I felt pretty well until Saturday. Saturday and Sunday had the usual “off” feeling – slightly nauseous and had to keep eating to feel comfortabe. Will not even mention what I felt like eating . . .odd food with strong flavors . . . but it kept me feeling comfortable. Find if I eat something every hour or two I’m much better . . . ate lots of Mandarin oranges. Still feel cold much of the time and I am sure am also  struggling with the anxiety which goes with a diagnosis like this. Much better on Monday and had our grandson to distract me and would have been fine today if I had gotten a better night’s sleep. More side effects – my eyebrows are almost gone – but so is the really irritating cough. Go figure. Also much more watchful because of the couple of days in the hospital – checking temperature and such.

Once again, Deb made wonderful stuffed peppers and “the kids” gave us restaurant gift cards which also helped us through the “what’s for dinner” issue. My sister and my children and Koka have been there for me continually. The one person who has helped me through this most of all – I haven’t even mentioned. I do not know how I could have gotten through this without Jim. His sense of humor has helped both of us through this and his kindness and
thoughtfulness have made each and every moment easier. I really cannot imagine going through this without him by my side.

Well, that was the last chemo. Now it will be check-ups and “wait and see.” I may not post again for awhile because there really will be nothing to say! I am so thankful this part is finished.

I had my check- up on Wednesday. My lungs are clear – although I still have a cough. I was mistaken. I discovered after reading my hospital report that pneumonia was noted in both lungs. So glad I went to the emergency room when I did. I am well enough for my last infusion on the 11th.

It’s been a difficult couple of weeks.The death of a younger family member was sobering and a couple of emergency room visits and then surgery for another family member. My anxiety level is high – just not looking forward to the after effects of the chemo and shot and just want sunshine and blue skies and spring. I confess to being tired of hospitals and doctors – as wonderful as they are when you need them. My poor bald head feels cold without covering and I feel cold a lot of the time. . . I know it’s winter’s chill particularly affecting me . . . I have yummy stuffed peppers tucked in the freezer thanks to Deb and several dinner dates before chemo. It’s so nice to have things to look forward to. Not sure when I will sign in after next
week and felt I just needed to “touch base.”

I was realeased from the hospital yesterday. I haven’t been in a hospital overnight since Elizabeth was born over thirty years ago.

Very early Monday morning I decided to call the oncologist about symptoms I was having. I had had chills and some bone pain and had been awake since 3:00 a..m. The real problem was labored breathing and the strangest pain – my throat and the area behind my sternum were sore and felt as if there was pressure from something. Of course my anxiety escalated. I checked temperature – 99 – heart rate – couldn’t get it right – and finally decided I had to make the call. I was told to take tylenol and my lorazepam for my anxiety and if I wasn’t better in half an hour to go to the emergency room. Since the hospital is half an hour away we followed directions, got dressed and headed that way hoping that we would end up going out to breakfast. I was admitted to the hospital with pneumonia in my right lung (the cancer is in my left lung). Once again, this was caught really early and I started to respond to antibiotics . . . but more importantly I found out that the pain in my throat was caused by inflammation due to gastric reflux. I have never had problems with indigestion until chemo. Now that I think of it I probably exacerbated it with my use of mint tea and mint cough drops since mint will relax the stomach opening and allow reflux. Damn.

So, I went through the full routine. Compression socks, massaging leg wraps, innumerable “sticks” because my veins are unhappy (can’t use the right hand because of the lumpectomy/lymph nodes and had an infection on the top of my left hand after my last breast cancer chemo) and they could not use the port for eveything. Shots in my stomach to prevent blood clots and i.v. antibiotics daily. 6:30 monday night I suddenly felt okay and at 4 in the morning I got up and cleaned up – had sweated through all the bedding, etc. – and decided if I was going to tidy up I might as well do a good job – and even straightened my room. I figured just as soon as I really hated the food I would be sent home. Bingo! Wednesday morning breakfast was the worst.

Anyway, I do know that I had no blood clots, lesions, nodules, etc in the chest area – just the plain old pneumonia – which was probably bacterial and which might not be that unusual due to my compromised immune system. I have a week’s worth of prescriptions for antibiotics and a month’s prescription for an acid inhibitor so I do not continue to irritate my esophagus. (Do not panic if an ENT says you need to be scoped – piece of cake – I was afraid a camera would be used in my throat and I have a strong gag reflex – a really neat segmented instrument was put through my nasal passage- not painful or uncomfortable except that my eye really teared when it was removed- and I will NEVER worry about that test again.) My chemo has been postponed for one week so that my antibiotics are finished . . .and all the doctors and nurses and aides and technicians at NIMC were phenomenal. I feel a bit weak – but staying in bed for two and a half days sucks . . .and I am sure we’ll get past this too. My room looked like a florist shop and I had visitors and felt very much taken care of. I am indeed fortunate. I just wish I was through . . .

Well, the past week and a half has been pretty much what I anticipated.  I really shouldn’t complain – I could have felt so much worse and had so many  other problems- but it has not been a picnic.  After effects of chemo set in same as before – three days after infusion – and were as mild as they had been with half the amount of chemotherapy.  I should be thankful.  However, the Neulasta was just as big a jolt as I remembered.  Felt like I hit a wall the day after the shot – which was the same day the chemo reaction set in – achy, mildly nauseous  and out of it. Thought I was having digestive issues and realized the pain was probably across my hip bones and pelvis.  My ankles and knees hurt and it actually felt uncomfortable to walk one morning.  Had been warned that I would have bone and muscle aches.  Nurses explained that some people actually feel like they are having a heart attack due to their sternum and bones in their chest hurting.  Had taken my Tylenol before my shot and took one at bedtime. so I have continued to sleep  well.  Had the usual digestive problems so had my Miralax cocktail nightly.  Today is the first day I feel almost normal.  I have to admit to feeling a little down.  It is so easy to take “feeling well” for granted.  That was all I wanted- to feel well.   On Tuesday the blood test confirmed that all was well – red blood cell count just a little down and immature red blood cell count elevated but everything else was within “normal” range.  For all the discomfort, Neulasta had done its thing.  Wednesday I had my follow up with the radiologist and I will not see him until July.  My health is good.  My lungs are clear.  With any luck all of this is doing what it is supposed to do.

A few things have helped me through.  A “survival” package came in the mail from Nate and Kris just in time.  Bit O Honey is awesome for mild nausea in my case.  The good wishes and encouraging thoughts helped as well.  Best of all was their  good news.  My son had to go out of town and we helped with Alex.  A seven year old is wonderfully distracting.  My sister helped with transportation as there were conflicts with Alex needing to be picked up or dropped off – I feel well enough to eat but not always like eating “just anything.”  Eating out with my sister and with my husband and  Koka gave me a greater range of selection . . .and I didn’t have to cook.  And the blog 4 Times and Counting  continues to inspire me.  The author is a lawyer and mother of two young children who has been diagnosed with Triple Negative Breast Cancer four different times – all primany diagnoses.  Her story is incredible.  I look at everyone around me and realize there are so many people with incredible stories fighting incredible battles.

February 4th will be my last chemo – followed by Neulasta.  I am simply thankful knowing that this will be my last treatment for now.  In the meantime, I am enjoing feeling “almost normal.”

On Wednesday I received double the dose of chemotherapy I had been receiving during radiation treatment. The center was busy. My port did not cooperate with giving a blood sample so I was “stuck” a few times. Seemed to be some sort of “mechanical” problem since fluid went in but blood did not want to come out. Doctor declared all okay to proceed and so I had my treatment. Went to Olive Garden for a lovely early dinner and then slept a little more and went to bed. Woke up at 4:40 ready to go – felt good and energized all day. Had a little company. Did a lot of cleaning and a little baking. Decent dinner of cod fish and fresh vegetables and early to bed. Woke up at 4:00 feeling warm and a slightly rapid heart beat – decided I needed more sleep and 1/2 lorazepam and a bottle of water later slept ’til the alarm went off. Today was the day for Neulasta (an injection to help prvent infection which increases white blood cell count but can cause bone aches) – and I remember that hitting me harder than chemo before. Took my pre-injection tylenol to combat bone pain and Elsie took me to the Center for the injection. So far, so good. Of course, perhaps we’re just on the same schedule as before and it will hit tomorrow. Lots of details and really not that much to tell. We’ll just see how this goes- but as of right now, I’m just a little sleepy! Am glad I finally shaved off the wisps of hair I had left – sure they would be falling out anyway – and now the wigs and hats are so much more comfortable. Funny how different it is having chemo in the winter – I even wear a turban to bed ’cause my head gets cold and I realized I’m not drinking as much water as I should because I haven’t been as thirsty. One more treatment of chemo and then we shall see . . .

First of all, I had a wonderful Christmas and “time off.”  Lots of family and friend visits.  Still have the Christmas decorations up and think I will keep them up a little longer this year.

I saw my oncologist on New Year’s Eve.    Discussed the “tooth issue” and he suggested it be pulled before I started chemo again.  Was lucky – I called the oral surgeon to see if I could have an earlier appointment  and he was able to get me in for the consultation earlier – he’d had a cancellation – and was then able to get me in on an emergency basis this past Monday.  This will give me a bit over a week to heal before chemo starts again on January 14th.  Was really uncomfortable when the tooth was pulled – I’ve had just novocaine before – but this time it felt as if my jaw would crack.  One hydrocodone upon return home and one before bedtime resulted in a lot of sleep and I woke up with neither swelling nor bruising and no pain whatsoever – not even a Tylenol’s worth!  Had my first “non soup” meal today and it was wonderful!

Other than that, I really have nothing to update except that I am a little nervous about side effects from the heavier dose of chemotherapy.  I am reassuring myself that I can certainly manage since it is only two sessions.  There will be a three week break between infusions and then another PET scan.  We shall see.

Meanwhile – Happy New Year!