Monday, June 16, 2014

So Many Things To Say...

First off,  we are blessed in so many ways.  And I will share with you why.  But will do it in a couple of posts.

This post, I need to share an update with Tiffany, and would have liked to prior to now but our weekend was a bit crazy and I did not find time to update her status.

In the last post, Tiffany was admitted into Huntsman to try to figure out why she had the pain, get some scans, and hopefully start treatment.  The scans happened, and the results of them came back as noted and the doctors came in and told her about the tumor. 

Well, this is where the story gets a little crazy.  You see, our Dr Glenn has a team of doctors that she works with.  This team includes a bunch of doctors learning the oncology ropes.  Once Tiffany gets admitted into the Huntsman Hospital (vs. the clinic), there is a separate team of doctors that watch the inpatients.  So on Thursday morning, one of those doctors came in to Tiffany and told her about the tumor and left it at that, suggesting we would be in contact with the radiation oncology team to figure out the radiation treatment.  Come Friday morning we had still not heard from this team.  Now from here the details get sketchy, and I should probably have Tiffany write and explain it in detail because I am likely to get the next crazy part wrong in some manner as I was not at the hospital but working (but no fear, Tiffany was not alone - her sisters were with her if I was not).  I will do my best to help the casual follower understand, but will ultimately get the gist of the story correct and the end result is accurate. (Tiff - you can respond below if you feel that I did a poor job explaining what happened).

On Friday morning, there was a Fellow (who is an oncologist in training - as noted in a previous post, a Fellow is already a full doctor, but the Fellow program gives them the specialized training into oncology) working in the Radiation department who came to talk to Tiffany about the tumors and treatment.  Yes, tumors, plural.  Apparently her spine has quite a few tumors running up and down it.  This was nice to know, and not sure why this wasn't explained previously.  Of course, concerning, they set up an appointment for later that day to get mapped and then likely to start radiation treatment on Monday.  That was all dependent, however, on the discussion with the actual radiation doctor, that was still yet to come to see Tiffany.  However, this fellow did note that in the MRI scan she did on Wednesday night, they did find that her Sacrum, which is at the base of the spine, apparently was 'riddled' with cancer and the doctors where worried that it would break.

Of course, this new development was worrisome and did not help the emotional state of all those involved.

But the day was not yet done.

Eventually, the radiation specialist finally came in to talk to Tiffany.  He had taken a look at the scan and told her that yes, indeed there were some tumors up and down the spine, BUT, that they were a lot smaller and less consequential than the previous doctors had suggested.  In addition to that, he also said that most of these were there when they did the MRI scan 2 months ago and most of them haven't changed much in size.  He also noted that although he thought radiation treatment on the Sacrum would need to commence, the other tumors may be able to be fought with a chemo treatment. 

Oh, blessed news!  We of course have questions as to why we were never told that there were other tumors up and down her spine from two months ago, but this was mostly answered by another doctor a few minutes after the Radiation specialist left... Dr. Glenn showed up!

We have been working with Dr Glenn for a few years now, and being our main doctor overseeing treatment, we have created some bonds as well as some trust.  We know that she is qualified and has the experience to treat these rare cancers.  And with that in mind, there comes a peace of mind when she is involved.  We don't normally see her once we get admitted into the hospital as she has a team of doctors who take care of the inpatients.  But came she did and to me, at least, it was a bit of welcome news that she did.  She brought with her some even better news.

The news was this... the tumors are minor whiffs of a thing.... something not to be overly concerned about, and, that she thought she could get them with a chemo treatment rather than radiation.  You see, radiation treatment is not kind.  It doesn't just break down the tumors, but it also breaks down other tissue, including bones.  And this is not what you want if you can avoid it.  Chemo, is also mean.  But it has a different effect and Dr. Glenn believes it is the better way to go.  When Tiffany asked her what was next, Dr. Glenn put her hand in her pocket and pulled out a paper with a long list of drugs and options written on it.  She said to Tiff that she has been thinking all day of what to do and has been writing notes and possible drugs to use.

And that, friends, is why we love this Dr. Glenn.  We know that what we are battling does not have a documented method known how to fight this disease.  We are going off of her experience and expertise in fighting these rare T cell anomalies.  But above that, there is a compassion that she has.  We know that she is very busy as she runs the department, teaches, and works with patients, we know she cannot be watching over us constantly, but proof that she does think and care was in that paper.  And if that isn't enough comfort, the fact that there seemed to be quite a few different options on that paper gives us comfort as we continue down this path, knowing that there is more than one option left, and that we are not backed into a corner and only have the option of one treatment.  Yes, of course, we wish the treatments were one and done.  But we understand that this disease is not known and unknown how to handle.  We just hope and pray that this next treatment will work.  BUT IF NOT, we still have other options to get this cancer to respond.

So, not to belabor the point any longer, a decision was made and treatment began Friday afternoon.  She started a new chemo drug that is outpatient and will be administered every two weeks.  Normal time frame for this treatment is about 6 to 8 rounds.  It has similar side effects as most chemos.  It will cause her blood counts to drop (and will eventually rebound), will lose her hair (her hair has actually started growing back - the last treatment she had that made her lose her hair has been over two months ago - so it started coming back - just in time to lose it again!), and make her tired for a time.  Though the hope is that with her blood counts much higher than where we started back in January, the downs won't be quite so down and her good days should be better days than in the past.  Though time will tell and by early Monday, so far, so good.

She still has pain from last week, but the good news there is that they have found the right medications to give her the pain relief she needs to be able to function and enjoy life.  It was a rough week, probably her roughest.  But towards the end of it, it became the best.

It goes to show that miracles do come, but sometimes only after a trial of your faith.  And as exquisite was her pain, the week ended with a similar, but inverse, amount of joy.

We know there are so many people praying and thinking about us, it is overwhelming to consider.  We thank you and are grateful to call you friends.



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