Wednesday, August 22, 2012

Art and life

 Last Saturday, Jim, the girls, our friend Sherry and I went into the city to see a photography exhibit, entitled Breast Cancer Captured Through the Eyes of Love.  The photographer, Angelo Merendino, shared his wife Jennifer's battle with breast cancer through some of the most amazing photos I have ever seen.  I had read their story online and started following his page on Facebook, when I learned that he was going to be bringing an exhibition of some of his photographs to Cleveland... to a local cancer support community called The Gathering Place.  I looked forward to seeing the exhibit, especially since it was scheduled to take place at a TGP location on 'my' side of town.  I had plans the night of the opening but hoped to get to TGP soon for the exhibit.

Unfortunately, the exhibit closed six days later.  Even though TGP had agreed with Angelo about the photos to be shown, once they were up, there were complaints from clients and volunteers that the photos were too difficult to look at.  A small furor played out here in Cleveland until a local gallery stepped forward and offered their space.  So, Angelo's exhibit moved from the suburbs into the city, to Convivium 33.  

After my disappointment about the loss of the original venue died down, I was glad that the exhibit was going somewhere I had never been.  I was even more glad when we arrived at the gallery on Saturday morning.  It's housed in a former Roman Catholic church.  It is a beautiful space and was a wonderful setting for photos that showed true love in the midst of some of the worst experiences a family can endure.

I thought I might become emotional when I looked at the photos.  And I did, but not for the reasons I expected.  While some of the images were especially haunting, the ones that affected me most emotionally were of Jennifer in late stages, when she was bald and her face puffy from medication.  Her brown eyes bore through the illness, looking into the camera lens.  Some of the photos reminded me of my late friend Deb, who also fought breast cancer that metastasized to her brain... who also had deep brown eyes that made her beautiful even when the disease robbed her of her natural looks.  I held it together, partly for myself and partly for the girls.  I had debated whether to bring them or not.  I didn't want them to be upset by the photos, or to feel like they were looking at my future.  Before we went, I told them that if they couldn't take looking at the photos, that Jim or I would be happy to leave the gallery with them.

However, I needn't have worried.  Our girls are constantly amazing, and showed it again at the exhibit.  They looked at the photos thoughtfully, though Caroline did want to move along a bit faster than I did at times.  I asked her if she was bothered by the photos but she said she wasn't.  In the lobby of the gallery (the vestibule of the church) there were tree branches set up like a leafless tree.  Note paper with attached ribbon was provided for anyone who would like to leave a message for Angelo.  So, the girls and I took advantage of the opportunity to make a few notes:

Rebecca's note:
The text reads:  I'm 9 and LOVE photography.  You're pictures are the most insparing yet. My mom has cancer.  Hope comes from these pictures.  (signed in cursive) Rebecca M.

NOW I wanted to shed some tears!  Nobody prompted Rebecca to write any of that.  The only help she got was to ask me how to spell "photography".

Caroline's note:

On the left:  Art X0X0X

On the right:  I LIKe your Art work
I'm 6 I Love Art (I re wrote those lines on the left as they were hard to read)
I believe she signed the back but I didn't get a photo of it.

Then my note:  Angelo, as a cancer patient myself (kidney) this exhibit held special meaning for me.  Your love for your wife and hers for you shines through your photos. 

My husband and I brought our young daughters to your exhibit - I wasn't sure if they could handle it but they both were very touched.  I don't know what my future holds but as long as I have the love and support of my family and friends, it will all be okay.

Thank you for sharing Jennifer with us.

Liz Monahan

For sure, some of the photos are difficult to look at.  But it's part of cancer - it's not all about pink (or other color) ribbons.  However, even when cancer and its deadly treatments ravage a person's body, their spirit still dwells inside them.

Saturday, August 18, 2012

Breaking the silence

There are many things that we take for granted, don't miss until we don't have them anymore.  For me lately, this has been stamina.  I definitely tire more easily than I ever did pre-cancer treatment.  Add in the daily tasks of living, commuting, working full time, and by the end of the day I don't have the energy or attention span for anything that needs either of those commodities.  Thus, my long silence here.

Fortunately, Afinitor continues to keep my tumors from growing, which is obviously most important.  Now, I have scans again next week, so that news could change, but hopefully it won't.   But some days I definitely still feel like a cancer patient, between the fatigue, itchy legs, bowel troubles and occasional nosebleeds.  I've had a few nosebleeds while on Afinitor, not many and none severe, but I can definitely say that I've experienced more nosebleeds in the last 6 months than in the previous 47 years of my life.  And of course I've added a new activity to my repertoire... blood transfusions.  My red blood cell counts have really tanked - another Afinitor side effect.  In early June I went into the Clinic and had two units transfused.  The process itself was easy, thanks in part to having my port.  Since my port has two lumens (access points), the nurse accessed both to flush them, and then used one for the transfusion.  I later decided it looked like a small vampire had bitten me, only in reverse!

Above and to the right of the 'bite marks' is the scar from when the port was implanted almost 3 years ago now... it's become very faint.

So then I was ready for the juice.  As a preventive, I was given an anti-nausea medication, and an antihistamine to prevent or lessen hives, which I understand are an occasional effect of transfusions.  The antihistamine just allowed me to nap for an hour or so, which was great because my appointment was early in the morning, and because I'd had lab work drawn, I'd had to fast overnight, which meant No Coffee.  I spent the rest of the time playing on my phone and reading, while the good stuff dripped into me.

Such a pretty red, don't you think?

The transfusion had the intended effect within a couple of days; I definitely felt more energetic.  Dr. Rini told me that I might need to have transfusions periodically, and that period turned out to be shorter than I'd hoped, as when I was at the Clinic for my July visit my counts were way back down.  So I'm going to do it again on the 15th of August, unless I feel really bad before then.  I think I'll be okay, especially since this week is not expected to be as hot as it's been most of the summer here.  So it appears that I've added another intervention to my 'new normal'.  It's interesting how I've become used to these things as they've popped up; I don't even think about most of it anymore.  But when talking to someone not in the kidney cancer community, I realize that what I've now taken for granted is a daunting list of medications and interventions to the other person.  

UPDATE:  I wrote this post several days ago, meaning to put the finishing touches on it and send it out.  Lo and behold, my during my most recent period of procrastination, my saga has moved along.  On Monday I had my usual CT and MRI scans, and on Wednesday went to see Dr. Rini and to be transfused.  As a result of the scan results, I'm no longer taking Afinitor and so no longer part of the clinical trial.  I had a small  increase in size of the two mets in my liver, so I've "progressed" while on treatment, to use oncology parlance.  It's not much of a progression, fortunately.  Other than the changes noted below, there's nothing new and nothing else grew.

CT of Chest:
There are scattered pulmonary nodules bilaterally, all of which are less 
than 5 mm in diameter. For reference, there are two adjacent right upper 
lobe nodules, the larger of which measures 4 mm in diameter and is stable 
since 2/20/2012 exam. A 4 mm right upper lobe nodule us unchanged since 
the prior exam dated 6/18/2012 but is less dense than on the exam dated 
4/23/2012. 3 mm right upper lobe nodule (image 73) is stable since 
2/20/2012. No new pulmonary nodule. No pleural effusion, pneumonia, or 
pneumothorax. Central airways are patent. No endobronchial lesion 
MRI of abdomen/pelvis:

Status post left radical nephrectomy. There is no evidence of local 

The right kidney is normal in size. No focal renal lesions are present on 
the right. There is no hydronephrosis.

The liver demonstrates diffuse fatty changes. Again seen, two enhancing 
hypervascular lesions:

In hepatic segment VIII, 1.5 x 1.2 cm (series 19:26) previously 1.2 x 1.1 
In hepatic segment VI, 2.0 x 2.0 cm (series 19:12), previously 1.5 x 1.3 

There is a 1.2 x 1.0 cm enhancing retro-aortic soft tissue density above 
the level of the renal vessels is indeterminate in etiology but stable 
since the prior study.

The spleen, pancreas and right adrenal gland are normal. The gallbladder 
demonstrates multiple gallstones with no signs of acute cystitis. There 
is no intrahepatic or extrahepatic biliary dilatation.

No adenopathy. No ascites or fluid collection.

Again seen is a 1.4 x 1.2 cm enhancing nodule in the mesenteric fat in 
the upper mid pelvis (series 19: image 19).





However, progression = time to look for something else.  I asked Dr. Rini what else he had in his bag of tricks, which made him smile.  He had two options to run past me.

Go on Inlyta, the newest weapon in the renal cell arsenal, and which was offered to me in February when I decided instead to go with the Afinitor and the trial.  If I qualify, join this trial:

 Um, #2 please... I have been following with interest the comments of other RCC patients on this trial and on other trials using this drug, which used to be known as MDX-1106 but now is BMS936558.  (The letters in those names represent the drug company who makes the drug; in this case it was originally Medarex but then they were acquired by Bristol Myers Squibb.)  The trial drug is an antibody therapy, so works on the immune system, rather than on blocking protein pathways to keep blood vessels from growing to and from the tumor, like the other drugs I have been on.  This trial specifically is looking at pairing up this antibody therapy with a known RCC drug, either Sutent or Votrient, which are similar drugs though not exactly the same.  Since I have already been on Sutent and had progression of disease, I would have to be part of the Votrient arm of the trial.  According to Dr. Rini, there have been more toxicity issues reported with the Votrient patients than with the Sutent patients.  He and Laura will be on a conference call with other investigators this coming Monday and he will know more then.  There are a couple of other small issues to get through, but basically, if the trial is continuing to fill slots for people on the Votrient arm, I am likely to get in.  Please keep your fingers crossed for me as I'd love to try this new drug out.  If I don't make it onto the study, I will at least have Inlyta to fall back on.  So, I won't be devastated if that's where I end up, but I admit I will be disappointed!

Next week I will know more.  Until then, more waiting... and remembering that life is going on during the waiting period, as it always does.


Update on Jim

Some of you have asked me how Jim is doing.  I forgot that I'd left you all with a cliffhanger about his medical issues! So here is his update; I will update myself next.

Jim's back saga has continued throughout the summer.  The MRI that he finally had in March showed that he has a significant herniation of the disc between his L-4 and L-5 vertebrae.  While this was not great news, at least we finally had an explanation for the pain.  He got an appointment right away to see a spine doctor, one who is not a surgeon but does other interventions like injections. (He will be Dr. W here)  This doctor felt that Jim's case was too serious for injections alone to help, so he got Jim an appointment with a spine surgeon, looking for the first appointment available.  I went with Jim to the consult and it was the worst medical appointment I've ever been to... and this includes all of my consults where I was given bad news, and the appointment I sat in on of my father's in 1998 when he was diagnosed with stage IV lung cancer and told that he should get his affairs in order.  This was worse.  The surgeon, whom I shall call Dr. X, asked Jim to explain what was going on, and Jim told him, including the worthless ER visit described in my March post.  Dr. X chastised Jim right away, saying "You mustn't blame the people in the ER - that was correct.  You had bladder and bowel function so your case was not emergent.  Pain is not an emergency."  Oh boy... I could feel the hope leaving the room with those words.  He did a brief exam of Jim, and told us that the surgical procedure was a relatively simple one, but then told Jim that he is not a good candidate.  He cited Jim's weight and type 2 diabetes as being "severely complicating" issues.  He told Jim "I'm not saying I won't perform surgery on you" but then proceeded to explain why Jim shouldn't have it.  He told Jim that he needs to be walking, that sometimes these injuries resolve themselves, and that he might just be in pain for a year. Like, oh well...  I asked Dr. X flat out:  if Jim was thinner and did not have type 2, what would his chance of success be?  "oh, 90 to 95%!" said Dr. X.  Ok, so I got it... because it is riskier to operate on someone who is obese and who has diabetes, both conditions being associated with healing issues, well, Dr. X didn't want to chance messing up his statistics.  That told me that even if we decided to go forward with the surgery, that Dr. X would NOT be the surgeon operating.  He asked if we had any questions as he prepared to leave the office and I asked him about giving Jim more pain medication, since he was in such agony.  Dr. X was surprised... "you mean Dr. W didn't write you any prescriptions?"  No, Dr. W thought you would operate, Dr. X.  He told Jim that the amount of Percocet he was taking was too low, so he prescribed a much higher dose, along with a muscle relaxer and another pain medication.  So at least we got that.  *sigh*

So, Jim contacted Dr. W, who said, well, let's try doing injections; however, I think you should have them at the hospital rather than here at our offices, so he referred Jim to a pain clinic at the main campus of Cleveland Clinic.  Jim got in to see Dr. Y, who has a great reputation, that gave us more hope.  His resident did the initial assessment and asked Jim a lot of questions, then Dr. Y came in.  He recommended a series of 3 steroid injections into Jim's back, to be done at monthly intervals.  He explained that it might help enough to help him heal, but even if not it would be worth trying before surgery.  Of course the wheels of bureaucracy turn slowly, so while waiting for approval for the injections, Jim made an appointment with another surgeon, Dr. Z, who knows Jim's brother.  That appointment went much better than the first surgical consult.  Dr. Z did a more thorough examination of Jim, and showed us the areas of concern on Jim's MRI.  Unfortunately, besides the herniation, Jim also has some pre-existing bone spurs and narrowing of the spinal channel, which likely should be addressed surgically at some point anyhow.  Dr. Z recommended that Jim go through the injections first, and then when/if he feels like he is not being helped, to come back to discuss surgery in more detail.  He agreed with Dr. X that Jim has complicating factors but wasn't fazed by them like Dr. X was.  We felt much better after meeting with Dr. Z.

Jim had his first injection in late April.  He was sore for a few days but then began to feel improvement.  He had been lying in bed most of the time before this, so seeing him able to move was wonderful for the girls and me.  We had hope that the next injection, in late May, would really help but it turned out not to be the case.  Jim said that a few minutes into the procedure he started to feel intense pain on the inside of his leg, which he screamed through.  (nice, huh?)  After that, he found that while the initial back pain has indeed gotten much better, he had this new pain spreading across his glutes and in his legs.  If the new pain hadn't been there, he felt that he would be close to pain free.  When Dr. Z's office called to follow up on him a few days after the injection, he told them that he was a lot worse, and so was transferred to Dr. Z's secretary, who told him she would have Dr. Z talk to him ASAP and they would try to get him in to see him as soon as they could.  Dr. Z never did call back.

The third injection was not until late July, because there is a limit to how much steroid a body can take.  At that appointment, Jim told them what his experience was during and after the second injection, and felt like they didn't believe him.  Dr. Z looked at Jim's MRI again and decided that the space was very small where the injection needed to go, and so the pressure of the fluid was likely causing the pain.  OK, but why did he not get this pain after all of the injections?  For that we have no answers.

At this point Jim can schedule another injection, though there doesn't seem to be much use in that.  He did get Dr. Z to write him a prescription for physical therapy, which I think could really benefit him.  If you know Jim, please remind him to call for a PT appointment... if you know Jim you know he's not always his own best advocate.  He was told by Dr. Z's resident that it would also be reasonable to contact the surgeon if he didn't feel the injections were helping at this point.  I'd like to see what physical therapy could do for him first, though if he ends up needing surgery, then so be it.

He's definitely in better shape now than he was prior to the injections - at that point he could barely stand or sit.  Now he gets around, albeit with a cane, and takes rest breaks, but is otherwise pretty active.  If we could just get this new pain to disappear, he'd be back to himself.