Taking a Trip: Togetherness for young, Late Stage Cancer Families

On Sunday, I saw the CBS Sunday Morning Show which highlighted the Jack and Jill Foundation for Late Stage Cancer.  This foundation offers trips for young families who have children between the ages of 3 and 18, have late stage limited life expectancy cancer, have a life expectancy of at least 2 months and have not participated in any adult dream, wish or similar program.  The applications must be made by their oncologists.

This is a great program, although the amount of trips and locations are limited (donations are always welcome to help make this come through).  When I was first diagnosed with Stage IV (late stage) cancer, my daughter was 4 1/2 years old.  The second time, she was 17.  Literally, my daughter doesn't remember a mother who wasn't either fighting for her life, or limited because of damage to my pelvis.  My hiking with her wasn't as long as it used to be because the radiation tightened the muscles in the right hip and it was often painful.  I have talked to her about her childhood and she remembers me sometimes not going on hikes and trips, but sending her with her father as I couldn't do the physical part of the trips.

With the vacations together through the Jack and Jill Program, it creates times and memories which are pleasant and not always with the angel of death hovering over all.  Cancer takes a toll on the whole family.  In all my married life, we only took one vacation which was NOT to see family.  Funds are often not there for "fun" trips because of all the medications and co-pays we must pay.

I wish I had known about this when my daughter was still under 18.  But, it is there for others.

Take a look at the program.  You can find out more here.

Livers and Liver Biopsies

Tuesday, I had a biopsy of my liver.  When I finally got to see my oncologist and find out what "it's complicated" meant, it turned out that there was radioactive tracer uptake in three lesions in my liver which showed on my P.E.T. scan.

You see, when you have a P.E.T. (Positron Emission Tomography), you are injected with radioactive isotopes of glucose (called a radiotracer).  To prepare for the test, you must refrain from physical activity (even walking the dog) the day before and fast prior to showing up.  I think drinking lots of water the day before helps, at least it helps with your blood vessels being plump and easily accessed.  You receive the shot of the radiotracer, then rest for an hour.  Areas which metabolize, or consumer the sugar, more quickly than others will take up more of the radioactive material.  When you are put through a cyclotron, the clyclotron is able to make a 3-D computerized image of what is in your body and the areas which are metabolizing the radioactivity will show up hotter.  Since cancer cells are usually sucking up as much energy (sugar) as possible, those spots are hotter--they are metabolizing at a different rate so the diagnostic imaging specialists can see what is going on.  P.E.T. scans are used for other diseases such as Alzheimer's, Epilepsy and heart disease.

P.E.T. scans are great for showing early signs of cancer in the brain, lungs, bone, as well as indicating whether or not chemotherapy is effective.  Usually, it is used along with other tests such as MRIs to get a better idea of what is going on.

I had a P.E.T. scan a week and a half ago.  My oncologist called and said that the results were "complicated."  When I went to see him, he said that there was uptake in my liver, but that he didn't trust it.  Why? The P.E.T. indicated that there was no further uptake in my bone mets which had been diagnosed earlier--they were stable.  My tumor markers were still moving down which indicated that there wasn't growth in the tumor but that the cancer was being killed and my liver function was normal.

It was possible that it was cancer and that the tumor markers we were following were no longer effective in predicting my status because the cancer may have changed its characteristics and was producing different proteins that we weren't following.  The only way to know for sure what was going on was to have a liver biopsy .  In a liver biopsy, you are given an i.v. with saline solution which also contained some pain killers and light sedatives.  You would then be given a C.T. with contrast while a needle would go in and take tissue from the suspected areas. For two weeks prior to the biopsy, you should refrain from taking Ibuprofen as it has blood thinning capabilities which can cause  you to bleed when the biopsy is done.  Novocaine or another numbing agent was injected at a couple of  levels, the muscle on the exterior, and the "sack" which is on the outside of the liver which has nerve endings.  The liver itself doesn't have any nerve endings, so once you get past those other areas, you won't feel pain.

In my case, two of the lesions were at the back and one was in the center front, just below the sternum and to one side.  Since the easier one to get to was in front, a needle was inserted, I felt some pricks--the shot of the numbing agent...much like it used to feel when you got Novocaine prior to filling a cavity when I was a kid (they seem to numb the surface now before you get the shot so it doesn't hurt so much).  While it isn't pleasant, it isn't horrific either and the pricks are over quickly.  I was correct in thinking it would be as uncomfortable as when they have to dig to find my veins, but bearable.  Then, hollow needles are inserted and tissue cores of the area are taken to be analyzed.

Before doing the needle biopsy, the Radiologist took a look at the CT scan to make sure that it was clear and that he could see where he was going.   I was talking to the nurse and the technician....the nurse said "Boy, they're taking a long time.  What are they doing back there."  The technician looked back "hmm....they're hovered over the computer looking at the image."  I laughed...and told them it was because they couldn't find anything.

You see, the liver metabolizes glucose...and a P.E.T. is often a poor diagnostic tool for livers as it has a lot of  background "noise" --in other words, uptake of the radiation where there isn't any cancer.  When the radiologist returned, he had a perplexed look on his face.  I said, "You couldn't find it, could you?"  He said no, and I laughed and told him I thought that was going to be the case.  He said I could either go home, or he could take a sample from the area as indicated on the P.E.T. scan, but that he would be going blind.  I told him to go ahead because if there were areas of cancer in that area, then we had better do as best we could to determine whether or not it was or wasn't there....He said he would take the samples and analyze them quickly to see if he could see cancer cells...that it would tell us if we needed to look more.  This isn't the final say as a more thorough check would be made of the liver samples.  He only saw liver cells in the quick analysis.

After the procedure, I was to lay quietly, not moving or getting up in order to prevent the biopsy sites from bleeding for two hours. The nurse said that if I had had it on my side, that I should be laying on my side to add pressure, but since it was right in the middle and my port was accessed (thus being on my stomach would prevent the flow of the saline into my port in my chest), I just stayed on my back.

When I came home, I was pretty tired, primarily because I had accidentally read longer than I intended when I went to bed, and I had to be up before 5:00 a. m. to make it to the appointment.  In addition, I don't clear pain killers and sedatives from my system very well.  I wasn't to lift, do anything strenuous, avoid taking Ibuprofen for about a week.  I wasn't to drive the day I had the procedure either.  So...I slept for a couple of hours at  home, went to a quilting gathering with some friends picking me up...came home and went to bed.

There really isn't much to it....however, it does sound scary and most of my friends cringed when I told them I had to have a liver biopsy.  Of course, when you think liver biopsy, you think surgery where you actually have to open the chest wall. In reality, this was much less to worry about than you would think.  I arrived at the hospital at 6:00 a.m, had the procedure and left the hospital at about 12:30 p.m.

So...you're wondering why the lilies at top? Well, it was the only photo I could think of that I had which might illustrate this without grossing anyone out....and of course...I'm sure you are not too lily-livered to have a biopsy should you need one.

Disconnects

For quite a while, I have been feeling like the medical field seems to have a disconnect with their patients.  Somehow, it seems like the patients are driving the bus....but not really.  Since moving to Ohio, I have had a hard time getting medical people to listen to me or to actually treat me with the respect that they should have for themselves.

Take, for instance, what has been happening with me since last Friday.  On Wednesday of last week I had a P.E.T. scan, the first one I have had since April....and then only because I kept on questioning my oncologist how did he know that the drugs were really working and what if I had two different things going on? Why, for instance, couldn't I have two different types of cancer happening, breast cancer which was responsive to the drugs and another which had mutated and become resistant?  I was curious as I have been having pain in the Sacro-iliac joint for quite some time.  It feels and acts very much like my hip did before the acetabulum broke and told us what was really going on...but my doctor kept on dismissing it as being arthritis...or inflammation of some sort.

So, on Friday, while I was at the ophthamologists getting my eyes checked because I was diagnosed by the optometrist as having an epi-retinal membrane possibly caused by the chemo...my oncologist called and left a message on my answering machine at home.  He called at 5:15 pm. and said that he got the results back from the PET scan and that they were "complicated" and that he would call me back on Monday to talk to me about it. I knew that he wasn't in the office on Monday, or at least wasn't seeing patients and the last 5 times I have called the office and left a message on the medical assistant's voice mail, I haven't heard back.  No one bothers to return my calls.  So, I waited.  He never called.  He didn't call me today either.  I will see him tomorrow at 2:00 pm.  I am pretty sure I know what "complicated" means.  The last time he told me the PET was complicated, I had the progression in my pelvis.  So, I expect that I have more mets.  I suspect, given the amount of coughing I have been doing that it might be in my lungs, or at least more in my ribs.  I don't know.  I'm not really winged out about this as I know I can't do anything about it whatever it is...but I am terribly disappointed in my doctor and his office. If I am told that I am going to get a return call, then I should get a return call.  If he wasn't going to call me, or if he thought it could wait until my appointment on Wednesday, then don't bother to leave a message at all.  Hang up the phone.  Instead, I've been left to stew from Friday afternoon, until Wednesday.

If I were somewhere else, and I were talking to someone who was telling me this story, I would suggest finding a new oncologist.  However, I like this guy personally, he has a good track record with my husband's cousin and I don't know who else I would go to.  After all, I had started out at the James Cancer Center in Dublin Ohio when I first came down here.  My first appointment, I waited in a room for more than three hours....and over heard the nurses talking in the hallway discussing where I might be...(perhaps in the room they put me in initially, especially since I was still wearing a drape????).  The second time, I had a series of tests at the OSU hospital and I carried all of my mammograms, bone scans and other records (as at this time they had not been digitized) dating from 1999 until 2005.  They were late at the hospital and they took my files from me at the registration desk.  When I went in, I told the tech to get my films from the desk.  When I finally left...again after being almost two hours late, I flew to my appointment back in Dublin.  I got there 5 minutes before I was to be seen.  I asked if he was running late as I knew what my previous experience was,  and I hadn't eaten since 6:00 pm the night before and had driven myself the hour and a half from Troy. Oh no, he was on time.  My appointment was for 1:30 pm.  I finally saw him at 6:00 pm.  I then drove home.  Hungry and tired.  Two weeks later, I discovered that OSU had lost all my films.  Never to be seen again.  No, they were not returned to the hospital in Connecticut where they originated.

Needless to say, I switched doctors and even though when I told the guy at the James I wouldn't be seeing him, and why, he said "Well, if you have a recurrence in the future, you really need to give me a call because I am the best in the field for stage IV breast cancer." I'm sorry, but I can't entertain the thought of going back to this guy.

So I'm stuck.

I'm not as stuck as someone on the Inspire forum I just met today.  She lives in New England and is on Medicaid because her husband left her and her son.  She can't work because of health issues.  She has had extreme pain in her breast since May, but a mammogram shows nothing, nor does an MRI.  She thinks it might be inflammatory breast cancer because of how it is presenting.  She is now having bone pain, swelling in her legs, and the skin on her breast is orange peeling....all symptoms of advanced IBC.  However, when she went to the one surgeon who takes Medicaid in her area, she was told "It can't be IBC, you'd be dead by now."  She finally agreed that maybe she would do a single punch biopsy in a small area, but that would be the only shot she had.  Meanwhile, this person is still in pain and no one is listening to her.

Why do I feel like we have to paste $1,000 bills to our chests and stick burning sparklers in our hair to make people listen? Don't we deserve more respect than this?  Just maybe, just maybe we actually know our bodies and can tell when there is something wrong.  Listen up, docs, we are human, and we need people to understand and walk in our shoes.  It seems to me that there is a huge disconnect between healthcare and the patients....and something is likely to short circuit and burn the barn down.  

The Bucket List

Ever since the movie "The Bucket List" came out, it seems that the concept of having a list of things to do before you die is quite popular. In fact, it has become sort of a parlor game for milestone birthdays.

This week, when I was at the eye doctor's, I was chatting with a man and his wife while waiting for my eyes to dilate.  He said his wife recently had surgery for breast cancer and I said that I too had had breast cancer several times and eventually I told him that I was stage IV.  "Oh," he said "have you started on your bucket list?"  Uh...no.  Frankly, I'm too busy trying to stay alive.

And I'm too busy trying to get things done and taken care of so that when I do die, my family isn't burdened with stuff.  Literally and figuratively.  Besides, a lot of "bucket list" fodder either costs too much money, or are reliant on time.  I mean, my bucket list includes seeing my daughter graduate from college and settled in her own life.  Yes, even a grandchild would be cool...but none of these things do I have control over.

Yes, I would like to travel...to go back to Europe as I have only been to England and Scotland.  Ireland would be nice and seeing Scandinavia and Spain would be very neat indeed.  Friends who have gone have sworn that I MUST go see Florence and Venice....But, all of this takes time and money both of which are in short supply.

It's funny....why is it now imperative that people who are staring death in the face have a bucket list? and how in heaven's name are those of us who are fighting supposed to be able to do those things? How absurd!

In addition, it can be hurtful.  Take, for instance, what happened to a friend of mine.  She has been fighting ovarian cancer for several years, and has had quite a bit of surgery because of it.  She too is stage IV and was told that probably it would be back within a matter of a couple of years.  She recently went to a friend's 60th birthday party.  At the party, the honoree said "Ok, lets everyone make out our bucket list and read them to each other."  My friend was extremely uncomfortable with this and took the honoree aside and indicated her discomfort.  Then she went out and talked to another friend on the phone as she struggled to contain her feelings.  When she went back in, she was asked once again to make her bucket list and tell everyone.  My friend decided that this was not a good place for her to be at that time and she left.

Obviously, no one took into consideration what this might mean for my friend and it was all together too obvious that it WAS all about the honoree...which I suppose it was...but it was at a great cost to my friend and it was entirely unnecessary. I doubt that prior to the advent of this movie that many people would have this as a fun thing to do at a birthday party.

We all have hopes and dreams and for those of us fighting cancer, it is all too often that we realize that we have no control over whether or not we can fulfill them.  Then again, some dreams are best left as dreams, and unfulfilled 

My bucket list? Well..it is far too much like the smashed bucket hanging in the old barn at my parent's place. I can't figure out how it got there, and I don't know how long it will be there....but it hangs in the balance...

Denial or Hedging my bets?

I bought some fabric this weekend.  Mind you, I have tons of fabric....but I got a little more to work on a traditional quilt for my niece Beth.  Sometimes I wonder if I am a little silly....after all, I didn't really PROMISE her a quilt.  This summer when I visited her in Deer Lodge, I said "about your quilt" meaning the top I made for people to sign at their wedding last October.  She about pinged off the wall "A QUILT! You're making us a QUILT?"  Ooops.... it seems that she and her new hubby are short on bedding...and she is a sweet thing....and I adore both of my nieces.  But I wonder, should I really be spending the time to make her a quilt? Should I spend the time I have to make a quilted wall hanging from fabric my friend Stephanie bought to make her son but died before she could accomplish it?

I mean really, how much time do I have left?

And then I think back...yes, I have been battling this recurrence for far too long this time and I haven't been able to push it back yet.  But...if I stopped doing things when I was diagnosed with stage IV cancer, then I would have wasted a lot of time.  After all, I was living with no evidence of disease from late 1998 until 2010.  Just think...if I kept on living then thinking I would be dead soon....and not taking on projects and tasks...then, well, I would have missed out on a whole lot.

So....I keep forging ahead, knowing that perhaps I won't be able to pull out of this one this time.....but knowing that I will not let it stop me until I can no longer go on.