Sunday, October 31, 2010

Free week almost over...

This has been Bob's "free week" (no chemo), and his taste buds have almost gotten back to normal. Just in time, as he says, to return to the Velcade metallic taste. He has "taste-tested" almost every beverage, on the market, and things either (1) have no taste, or (2) taste like metal.

Water with lemon, a dash of Splenda, and lots of crushed ice seems to taste the best. And, very cold chocolate Glucerna for Diabetics is also tops on his list.

He has felt better as the week progressed, although his back has begun to hurt, again. And the Ambien, to help him sleep, hasn't done a very good job the past couple of nights!

Strange how situations change what we do ....BC (before cancer) he would only sit on the front porch, early mornings, to have coffee. Now, he enjoys rocking, in the sunshine ....and I love being there with him.

When Dr. Anderson told us that he had a "Deletion of Chromosome 13", I should have asked what that meant .....instead of just writing it in my journal. Now, I'm not feeling so good about what I'm reading online. Tuesday, I'll ask Dr. Hrom for an explanation ....and hope that it will be better than what I've read.

Tomorrow, we go back to Forrest General for Bob to get his Infusion Port. He'll first have to have Platelets, because his are only 48,000 - instead of the 150,00 - 400,000 that they should be.

Tuesday will end "Free Week" when Chemo starts, again. Maybe one day, every week will be free!

Thank you for all your support, and your prayers.

Saturday, October 30, 2010

UT Southwestern - Bone Marrow Transplant Clinic

Tuesday morning was filled with anxiety, for both of us. We had an appointment with Dr. Larry Anderson, a Multiple Myeloma Specialist, for a 2nd opinion; and to find out if Bob could be a candidate for a Stem Cell Transplant.

He was to be at the Seay Biomedical Building, on the UT Southwestern campus, at 12:00 for blood work. We arrived a little after 11:00 -  knowing that there would be more forms to complete. The lobby, outside the lab, was filled with patients like Bob, in various stages of cancer therapy. To say it was a sobering experience would be an understatement.

Bob's weight was 199, he had lost 18 lbs. in just a little over two weeks! And, when measured in August (BC - before cancer, or before we knew he had MM) his height was still 5' 11" - now he was 5' 9". Of major concern was the fact that his Blood Sugar was 432 - a combination of being taken off his medication and the effects of the Dexamethasone (steroid).

Dr. Anderson advised that he was going to suggest that the Dex dosage be reduced until the Blood Sugar could be controlled.  He also wrote a prescription for a different diabetic medication that could be combined with the chemo treatment.

We found that we had been blessed with another good doctor - one that was willing to answer our questions. As I took notes, he stopped to spell medical terms for me. How had he been so lucky, in such an "unlucky" situation, to have two great oncologist? God was certainly watching over him, thanks to all the prayers being lifted up, on his behalf.

Dr. Anderson confirmed that the diagnosis of Multiple Myeloma was correct.  He told us that the Bone Marrow Biopsy had revealed that he had 18% Plasma Cells (anything over 10% is abnormal). The Monoclonal Protein, which should be 0, is 3.4. The BMB also revealed that he had a deletion of Chromosome 13, Extra 7 & 9 Chromosomes, but his Main Chromosomes were normal.

He explained that Bob is now in the Induction Therapy phase, with 4 - 6 cycles of Chemo required. The Monoclonal Protein will have to be reduced to at least 50% (1.5 or 1.6) before he can be considered for a SCT.

Once the Monoclonal Protein shows partial response, he can return to Dallas for a 'Pre-transplant workup' which would entail another Bone Marrow Biopsy, Xrays, MRI of the Spine, Cardiac test, Breathing test, Blood work, etc.

Until then, we'll continue to take one day at a time ....thanking God for each day that he has, but praying for many more! We left Dallas, on Wednesday, headed back home in much better spirits.

Wednesday, October 27, 2010

Headed for Dallas, and the Bone Marrow Transplant Clinic...

So that Bob could have an extra day to rest, we left for Dallas on Sunday, Oct. 24th.  I gave him a Phenergan, prior to the trip, expecting that it would prevent any nausea, as well as let him sleep during the ride. He had felt so badly, the past several days, I had suggested that we fly.....he could wear a mask. Because his immune system was so compromised, we hadn't considered flying and having him breathe "recirculated" air with every type of germ. He vetoed the flying (I think it was the idea of the mask!!).

Usually, when we travel, we're like two magpies - talking about everything. We were extremely quiet on this trip. He still felt badly, and we were both nervous. He slept much of the trip, and I was left to my own thoughts .....and prayers.

The day ended on a happy note, in Dallas, with a visit from our youngest daughter, Robbie, and her family. Granddaughter Sydney brought her Papaw a framed Panorama Puzzle picture of Portofino, Italy, that she had spent hours assembling.  Family will always bring a smile!

Tuesday, October 26, 2010

Chemo ....10/15, 10/19, 10/22

The first Chemo treatment, on 10/12/10, made him feel good .....this might not be so bad after all!

On 10/13/10, Amedisys Home Health came to instruct me on the correct way to flush the Pic Line. I was glad this thing wouldn't stay attached to him, forever!

On 10/15/10, he had his 2nd Chemo, and then he rode with me to pick our daughter, Gale, up at the airport in Gulfport. Too much of a trip, shouldn't have done this!! He felt badly after this treatment and for the next few days, during most of her 4 day visit.

The Chemo was already affecting his taste buds.  He was constantly thirsty, and needed to drink 8 - 10 glasses of liquid each day to flush the Chemo out of his kidneys, but things were beginning to have a metallic taste. 

10/19/10 ....3rd Chemo....still not feeling well.

10/22/10 ...Chemo....4th and final treatment of this cycle. The Pic Line was removed, today. A Port will be inserted before the next Chemo Cycle begins. Finally, he feels better. We have learned that he needs to rest the day of, and the day after, Chemo.....and maybe, everyday in between if that's what's needed.

No Chemo for the next 10 days ....getting ready for our trip to Dallas and the meeting with Dr. Larry Anderson at UT Southwestern - Bone Marrow Transplant Center.

Chemo starts .....10/12/10

At 9:20 a.m., we met with Dr. Hrom (we really like this doctor) so that Bob could begin Chemo.

The doctor told us that Bob's cancer was a Stage 3. Unlike other cancers, MM only has 3 stages. He advised that Stage 3 meant that he would need treatment - where Stages 1 and 2 did not. We were also happy to hear that there were no lesions in his bones. Thank you, Lord!

The treatment would be Velcade (dosage based on his weight, each time) combined with oral Dexamethasone (steroids) 20 mg. taken the day of, and the day after, treatment. He would also be given Acyclovir, to prevent Shingles (a painful rash caused by reactivation of dormant chicken pox virus).

We were told that, after several Chemo treatments, he would probably experience peripheral neuropathy (tingling, numbness and pain in the hands and feet). And, he might experience sores in his mouth and throat. For this, we were given a "recipe" for a home remedy mouthwash - 1/4 tsp of salt, 1/4 tsp of soda, mixed in 8 oz. of water, to be used 4 times per day.  

Chemo would be administered Tuesdays and Fridays for two weeks, just a "push" (5 - 10 seconds) in his Pic line.....then 10 days rest before the next cycle.

Restrictions are:

  • No crowds, and no small children, because of his compromised immune system (no more WalMart experiences, for him!)

  • All fruits had to be peeled. Grapes, strawberries, blueberries - had to be washed thoroughly, and then put in the freezer to kill any bacteria.

  • No salad bars

  • No fresh broccoli or cauliflower

  • Wash hands thoroughly, and keep hands away from mouth and nose

One of the benefits of the Velcade (other than destroying cancer cells) is the fact that it usually does not cause nausea. Bob's stomach tends to get upset easily, so we went with my brother's (a throat cancer survivor) suggestion of a prescription for nausea medication, and even though he felt great on the first day of Chemo; he took a Phenergan prior to bed. We'll never know if the Velcade doesn't cause nausea, or if it's the Phenergan doing its job - and we don't care!

Bob felt great after the first Chemo treatment ......this might not be bad, after all!!

Monday, October 25, 2010

Hospital 10/7/2010 - 10/11/2010

Almost immediately, a Bone Marrow Biopsy was done to determine the Stage of Bob's cancer, and his prognosis. The Bone Marrow Biopsy is the worst thing I've ever witnessed - and I didn't see all of it (there is just so much that a wife can stand). He was given a local anesthetic, which only deadened the entry point......the "burrowing" into the bone, with something that looked like you might use to dig a small hole in your yard, was unable to be anesthesized. At one point, he asked for the procedure to be stopped.

On top of the Multiple Myeloma diagnosis, he had an abscess in his left groin that had suddenly appeared, and seemed to take on a life of its own.  On Friday, 10/8/2010, he was taken to surgery to lance the abscess, which turned out to be an ingrown hair. With his compromised immune system, the infection has wreaked havoc on him.

He was given bags and bags of fluids, in his IV, along with a heavy duty antibiotic, in the IV, to try and bring his calcium level down.  Finally, by the day he was discharged, it was 9.8, just within the allowable range.

He was given 4 units of blood, in two different transfusions, to combat the anemia. And, antibiotics (Clendamyacin and Maxipime) to deal with the infection in the abscess.

He was given steroids, which caused his blood sugar to rise. And, against his wishes, he was given insulin to bring it down.

Blood was drawn, and drawn, and drawn until it seemed that he would have none left - and no veins from which to draw the blood. Finally, a Pic line was inserted to make the blood draws easier.

He had good days, and he had bad days - I knew this was how it would be in the future.

On Monday, 10/11/2010, even though he still felt extremely bad, Dr. Hrom decided that he needed to release him from the hospital so that Chemo could be started, the next day. He later commented that he felt so bad, he thought he might die.

October 7, 2010.....

On October 7, 2010 the three of us; Bob, his sister Ginny, and I met with the Oncologist, Dr. John "Bo" Hrom (pronounced Rom), at the Hattiesburg Hematology and Oncology Clinic.  Dr. Rom is a young doctor with a great "bedside" manner, and he immediately put us at ease. He had reviewed the records from the family doctor, and he advised that he agreed with the diagnosis of Multiple Myeloma.

Multiple Myeloma is a rare cancer (only about 20,000 new cases each year). It starts in the Plasma cells, a type of white blood cell present in the bone marrow.  A group of abnormal plasma cells multiply, raising the number of plasma cells to a higher than normal level. The abnormal cells collect in the bones, causing bone lesions, and in the bone marrow where they interfere with the production of normal blood cells.

Because Bob was so weak, calcium levels were high (12.0), and he was anemic, he felt that he should be hospitalized to try and get the calcium levels down and the anemia taken care of. He was immediately admitted to Forrest General Hospital.

Dr. Hrom stated that he felt Bob might even be a candidate for a Stem Cell Transplant. Multiple Myeloma, Stem Cell Transplant, Cancer ......Bob's life....and mine, had changed in an instant. In the days before a diagnosis, I felt like I'd cried a river, we knew he had cancer, but at least we could deal with what was known. He, at least, had a fighting chance.

Saturday, October 9, 2010

And the journey begins.....

I've always compared my husband, Bob, to the "Energizer Bunny"....he usually has more energy than many men half his age. He also "never" feels bad (not that he doesn't, he just doesn't admit it).  At age 72, he still awoke at 4 or 5  a.m., and headed to his cabinet shop where he put in a full day's work. To the amazement of his friends, he could play 36, or 54, holes of golf when he went to the course.  

In May, we made a trip to Texas, and during a golf outing with our son-in-law, he hurt his back while playing. After a couple of weeks, it felt better. He was working long, hard hours to complete a custom cabinet and woodwork project for a customer's new home,  prior to our 5oth Wedding Anniversary in August. He looked tired, and he acted tired, and I attributed it to the job. I didn't learn until later, that he hadn't felt well for quite some  time. He had begun to think that something wasn't right, with his health. (Of course, he didn't share those fears - he might cause someone to worry, and that's just not his style.)

Our family commented that he didn't look like he felt well, during our Anniversary weekend. Just days after our anniversary party we left on a trip in our RV, planning to travel until the end of October.  At our first stop, in NC, Bob hurt his back again during a golf outing. He had recuperated from what he considered a bad sprain, in May, so there was no reason to think he wouldn't recover from this injury. But, it was not to be.

We left NC, headed north, and I only knew he was still in pain because he bought Bengay, and a back brace in Indiana. He began using a heating pad, taking Tylenol (which he would hardly ever do), and just generally wasn't feeling good. But, because we were "on vacation", he continued to try to do the things one would normally do.  As I look back on those days, I wonder how in the world he was able to move - knowing the pain he must have experienced.  I suggested, several times, that we should consider heading back home - and he resisted, assuring me that he would "get better".

At an RV campground, on the shores of Lake Superior in northern Minnesota, he finally agreed that we needed to go home. I knew he was in real pain when he said he needed to go to a doctor. This was a man who didn't even like going for an annual checkup.

We started back south,  often with the heating pad behind his back as he drove. Many times, I offered to drive the RV - but he considered that "his job", so he continued. I'm sure he also thought he'd be under more stress, with me under the wheel! The car I could handle, the Motor Home, not so well. We stopped, for him to lie down and rest, more often than usual. I knew he was in pain, but I just didn't realize how bad it really was, and he very seldom complained.

We arrived back home on Saturday afternoon, September 25, 2010, and he immediately entered our house and laid down. He was fatigued, weak, lethargic, and he appeared jaundiced. I had scheduled a doctor's appointment, with our family doctor, for Monday afternoon - and it just couldn't come soon enough!

I was beyond worried, and had become afraid that his problems were not being caused by his back. I didn't know that he was having the same thoughts. We were a couple, married 50 years, who usually talked about everything; and we couldn't seem to voice our fears about this.

On Monday afternoon, he told our doctor about his back pains. She sent him to the hospital lab for blood work, but only for Hepactic functions (possibly because I had suggested that he appeared jaundiced),  and scheduled an MRI for the following afternoon, Tuesday. I drove him to the Imaging Center, and actually hoped they'd find something.....a bulging disc, anything.

On Wednesday, the nurse called from the doctor's office to report that the blood work, taken on Monday, was not in the normal ranges.  She also reported that the MRI showed an old fracture, but nothing to cause his current pain. I requested more blood work. I was concerned about his liver and his pancreas, based on the earlier results. This time, the doctor ordered blood tests that included Serum Protein Electrophoresis, which is used to identify Multiple Myeloma.

Each set of tests produced more "out-of-range" results, but it still didn't seem that the doctor was as concerned as we were. On Wednesday night I called his sister, a retired dialysis nurse, and voiced my concerns to her. I knew he was very ill, and I was worried that we weren't making any progress in getting a diagnosis.

On Thursday she came to our house, and on Friday a.m. we went back to the doctor with him for the 3rd time that week. I wanted to know what her plans were, and we were prepared to ask for a referral to another doctor. The doctor tried to tell us that he was "slowing down because he was getting older". We didn't buy her explanation, and told her he might be 72, but this was unusual for him.  She ordered blood tests (CBC, etc.) that should have been ordered on our first visit, as well as a chest x-ray.

About 3 p.m. on Friday afternoon I received a phone call from the doctor, requesting that I bring him to the ER; saying she would meet us there. His kidney functions were abnormal (BUN was 49 and should have been 7 - 18, Calcium was 11.90 and should have been no higher than 10, and Creatinine was 2.90 and should have been .6 - 1.3).  She wanted to give him fluids to try to bring them down. When we arrived, she had also written orders for x-rays of his Skull and Pelvis. She told his sister, and me, that she had conferred with a Specialist, and based on some of his blood work, he probably had Multiple Myeloma. I knew nothing about the disease - I only knew I'd just learned that my husband had been diagnosed with some form of cancer.

After receiving 1,500 units of fluids, additional blood work revealed that it had done nothing to improve his kidney functions. I requested copies of the lab results and learned that, not only were his kidney functions abnormal, he was also anemic. His platelets were 58,000 - about 1/3 of what they should have been.  The doctor advised that she would refer us to a Hematologist, the following week. Our journey had begun.....