Saturday, June 30, 2012
Saturday, June 30, 2012 -- And So It Begins
Yep, true to form, I'm late for my own Blog entry. And I know this bas to be a fairly long one so that I can catch the non-Facebook members up with the News I posted earlier this week on Facebook, and yet put enough details in to keep the Facebook friends feeling they are getting the missing bits and pieces.
So, I'm going to start off by saying, the latest News I have received re my treatments/condition has not been the best. We new this leg of the journey would eventually arrive, but at one point I seriously thought we were talking 15, 20, possibly 30 years away. I guess that is not unrealistic for anyone with cancer to hope for, right? After all, for the most part of my journey, I have had energy, felt pretty ok, sure I had complaints and all, but hey, I could have complaints with the common household cold. It doesn't take much to come up with complaints... but over all, I don't think I knew what a serious complaint was, so my complaints were fairly minor in comparison to the horror stories you hear of some people who go through horrendous journeys. I don't know if it's the different types of cancers, or what makes some horrendous and others fairly manageable (maybe someone should write a paper on this subject!).
But I digress.... on Monday, I got the bad News. For starters, I have been whining about my breathing struggles for some time now. It was finally determined that a tumor was partially blocking my bronchial airwave, so the plan was to throw some radiation at it (when in doubt, zap it!) and then that should shrink the tumor, hence opening up the airwave. I had been warned a week or so after the radiation treatments, it would feel worse before it feels better... but that didn't happen for 3 weeks. And they were right... it was horrible!! Harder than ever to breathe. Grrrrr! But I didn't say anything because, after all, this was expected. Well, it went on for a month and I finally asked, "How long is this 'it's going to be worse before it gets better' going to last?" Well, that stumped them... it shouldn't have been THAT long. So, time for an X-ray to see if maybe there had been some radiation damage on the bronchial tubes/airways. The X-ray didn't show any damage, so the radiation oncologist said that the cancer is more than likely now ignoring treatment and the radiation didn't do any good, but they wouldn't know for sure until my CAT scan which was scheduled for July 12th. I told him there is no way I could wait until July 12th to know what is going on when I was having such a hard time to breathe. This radiation oncologist did absolutely nothing wrong, but you know how sometimes a person just rubs you the wrong way?? That's how it was with him and I think he could tell I was not impressed. So he said, "Ok, I will call the Imaging Dept. and see if they can push the scan up closer on an emergency basis." "Thank you". Sure enough, they could and I had one now scheduled for the next morning, Tuesday.
On Tuesday, I had my Magnesium/Chemo appt. I was feeling weak and off, because it was so hard to breathe. When I got to the chemo room, I asked the Chemo Nurse if she could check my Oxygen Saturation Levels to see if this is any indication of why my breathing was such a struggle. She said "No problem, I'd be happy to do that for you!" She took them and that's when all the bells and whistles started flying. Normal breathing and oxygen intake is between 95 - 100%. Mine was at 82%. No wonder I was struggling! She called for my oncologist to come upstairs.
He came pretty darn quick, considering he was going into a meeting. He also had my CAT scan results. Well, the damn scan results came back as bad News. Not only did the tumors that we knew about, that we've been keeping fairly stable with the various chemos (we've now run out of chemo options) show growth, which means the chemo I was on was no longer working, there are now many new growths in both lungs... and in the abdomen... and two very enlarged lymph nodes. This meant stopping the chemo since there's no point pumping the toxin into the body when it's doing no good and yet causing side affects. So he canceled my chemo session.
Meanwhile, he ordered an assessment by a Respiratory Therapist and told me that the therapist would see if they could get me stable with a temporary oxygen tank to take home, but if they couldn't I wouldn't be leaving the building but staying in in the hospital ward there. Yikes! I wasn't prepared for that. After all, I had Bridget to make preparations for, which of course is totally an excuse on my part. Bridget was always my #1 priority should anything ever happen to me, who takes care of her on a temporary basis and who takes care of her on a permanent basis... and the plan has been in place for eons. But your mind goes in every direction. But the only thing I had with me that I would need was my iPhone and luckily my USB plug and cable (always prepared). But no change of clothes, toiletries, etc. This does not bode well for a Capricorn who must be prepared at all times (right, Christina????
Ok, moving on... so Rob, the therapist, did all these assessments and had a heck of a time getting the right dosage, etc. but eventually was satisfied that I could go home with a tank, and he'd call the Oxygen people. OMG People! Seriously... when the medical system wheel starts turning, it's an amazing thing! I got home about 4pm, I guess, by 5pm the Oxygen people called to see if I was home and they were sending someone over with my permanent tank and 5 portable "canisters". The Oxygen people have no idea what my diagnosis is, they just know I need oxygen and it's been ordered by a doctor. A very nice man shows up with this unit that looks like an air conditioner and I figure the best place for it is in the living room under the window (no, I was not thinking like someone who needs oxygen). He then hooks up a 50 foot cable so that I can walk anywhere I want to in the apartment since I'm going to need oxygen 24/7. He then shows me how to use the portable canisters and I'm ready to go... and he leaves. Half an hour later, another Respiratory Therapist shows up to make the assessment in the home and sees that I'm still struggling somewhat with the prescription the first therapist gave me, so he wants to up it... but that means a whole new set of equipment. Now I need to be put on liquid oxygen and a machine that can give greater quantities of oxygen than the equipment I had. Sure enough, an hour later, another man comes and he has the new machine, some new portable canisters, but the new liquid oxygen storage tank seems faulty... so he, or someone, is going to have to bring one the next day. The next day, their guys were busy, so they couriered that new storage tank... and the courier was NOT impressed that he had to get this up the stairs with no elevator in the building!! The full tank is about 120 lbs. But he did get it up, and he was actually very nice once he got it up. Today, Jeff came by and he taught Toby and I how to fill/refill the portable canisters, so that I can have some mobility and leave home. Jeff was REALLY nice and asked me if he could vacation on my couch for a week or so in the summer because I live in the best location of the city ;) Nice, fun, guy!
So, where does that leave us. Reality check. We knew this time would come but we had hoped that there would be years and years where the chemo would work and shrink, or at least keep the tumors that we knew about, stable. There had been no new tumors and we hoped it would stay that way. It's the dream of every cancer patient. But when you are a Stage 4, the nature of the beast is that the cancer has metastasized, which means it has spread, and it will continue to spread once it becomes immune to the treatments. That is where we are now... the cancer no longer responds to chemo or radiation treatments. And the new growth of tumors has started.
There is no way of knowing how fast it will grow now. Will it be fast growing? Are we talking days/weeks? Don't know. Slower growing, are we talking months? Don't know. I know we are no longer talking years :/ I don't really want to hazard a guess, but I think it's safe in saying it's going to be sooner than anytime we had thought before (I had been thinking in years).
Ok... so I think all you readers get the picture, right? I can stop talking medical talk ... stuff I really can't get my head around. So this ends the Everything According To Dr. Cheryl section. In looking back on it, it's pretty long winded and drawn out, but hey, that's just my way of writing. I tend to be very detailed in everything I write, from emails to Facebook Status Updates. Heck, even places where one can leave comments, I can write a book, and I really don't think that's what they meant by "comments" ;) I have oodles more to say/talk about, but I promise I won't write it all in this one entry ;)
You may all think I'm treating this just a little too casually or nonchalantly. I don't think I am...I don't really know. I do know that I've lived with the terror of this disease for 6 years now. By terror, I mean one is always on pins and needles... what is the next scan going to show, then having the scan and waiting for the results, then being on a chemo treatment and you think it's going well (and it is), when one day with no advanced warning it stops working. So it means starting a new chemo. Each chemo comes with it's own side affects and although I haven't had very many with each different chemo, the ones I've had have been pretty intense. So, you go through the side affects and you put up with them because this chemo is keeping your cancer stable and may even be shrinking it a little. The best news is that there has been no new chemo growths. But not to pop your bubble, the Oncologists are very upfront and they tell you that the chemos they have are pretty effective for what they are designed to do, but if the cancer has spread to other organs, then their job is to keep everything stable or possibly shrink the tumors and then keep them stable for as long as possible until the cancer gets immune to the chemo, then it's on to the next chemo. Well, there's only so many chemos they can use per type of cancer... eventually you run through them all. So the whole time you are going through your battle, you have this in the back of your mind. It's a constant roller coaster. Your emotions are all over the place. It's up, down and sideways. Family/Friends want to know how things are going and sometimes you don't have answers because you are waiting for results from tests or scans. Sometimes the results are good, sometimes they are very disappointing. Eventually you get to the place you knew was coming all along and, you just have to deal with it. Oh sure, you will hear all the stories of a favourite aunt or uncle who was Stage 4 and beat the odds... 20 years later and they are still doing fine. Or someone who has gone in remission... they still have the cancer but it's stable or has disappeared so the scans can't see any trace (this is known as NED - No Evidence of Disease) and people get very excited by this because they confuse NED with CURED. Two very different things. When our technology can't detect the cancer anywhere, it doesn't mean it's gone, just that it's too small to be detected. I have never gotten to the NED stage. For the 6 years, I have lived with cancer and been treated for it. And now we are at the stage that I dreaded getting to but it was inevitable at some point.
Nature has a wonderful way of saying, "Well, it isn't going to do you any good to panic or get hysterical". I can't really explain what it is... it's not fooling me or pulling the wool over my eyes, but it is keeping me calm about this stage. I still don't know when the outcome is going to happen. Do I have a couple of weeks, or a couple of months left? Chances are, since I've told everyone, it will be stretched out for months and months! ;) But whatever... I am so pleased that I am surrounded by the most incredible friends, both here in Vancouver and on Facebook and those of you reading the blog.
That leads me to the question everyone is asking... "What can I do? What can I make? What can I bring?" The answer is nothing :) I literally have everything I need.... and as us BC'ers know, anything to do with medical equipment/drugs/comfort care/services are all provided and paid for. As for comfort food/meals/tempting desserts/etc that is a problem in that I don't have an appetite so even when there is food, I'm just not hungry. We are working out a bit of a schedule because I have found if I don't eat then my blood sugars go all wonky and boy do I feel crappy then, but we have that figured out. Now we just need to find the space/storage, which is very limited in my kitchen.
Lovely gifts of plants and flowers... personally, I love the thought, but again, I don't have the space in the apartment for them. This is just a one bedroom apartment that has plenty of "stuff" and no real shelf/counter/table space ;)
But what have I really been touched with and seriously, it has carried me through this week BIG TIME?? All the comments/notes/private Facebook messages/emails where you have sent your personal thoughts. OMG... when I woke up the next morning and say close to 200 comments on my Facebook Wall in response to my Status Update, it move me to a whole different plane of existence. For those of you not on Facebook, there is an option at the bottom of each Blog Entry for leaving a comment. You'll see a little envelope or pencil... just click on it and it will give you an area for writing a comment, as well, an option of how you want to sign in for doing the comment... either with you gmail account, or some other account and if you don't have any of them, then as "Anonymous". Just remember, if you sign in the Comment section as an ANONYMOUS, sign your comment in the body of the comment... otherwise we could have a multitude of comments logged in by Mr. Anonymous and not know who wrote them :)
Ok... I'm getting tired now, not that I wrote this all in one sitting, but I think I better end it and post it now. Toby, who took Bridget for her walkies, just heated me up some soup... I think that's my clue ;) So many of you have written wonderful emails, and OMG all the comments on Facebook! I want you all to know I've read every single comment, and am reading every single email, and every single Facebook private message. But if I don't get back to you, it's not because you've fallen off my list
, it's because I'm not used to my energy, or lack of energy, level and I've just smack dab run out of time today. Tomorrow's another day!! :) We are also trying to juggle the visiting schedule because of course I would have everyone come over 24/7, but I have to be practical. Tomorrow, I'm a little leary, but if the weather is nice, my neighbor Mimi is going to walk with me to the park next door (Alexandria Park) where there will be music in the bandstand. We'll sit on one of the benches on the Bidwell Street side.... then Michel LaFleche is coming over from the island. SO, Facebook people and Blog people... if you don't hear from me tomorrow afternoon onwards, don't worry... I'm being a juggler. But I probably will be twittering and fb'ing in the morning from bed and the iPhone that wants to autocorrect everything I say to some insane nasty words :) :)
Pink Hearts and Pink Stars to all... and to all a Pink Night :) :)
Posted by Cheryl Hutcherson